Make your extra day count for children like Alex

This Leap Year, Acorns Children’s Hospice is calling on the local community to help us make sure our lifeline care and support never stops. We are urging people to leap into action to help cover the costs of the extra day of care on 29 February. Dudley Mum Sam Barklam reveals how making your extra day count will help local families like hers.

“I’ll never forget that first visit from Acorns, it was just like an angel was coming to help me.”

For mum Sam, the visit came at a time when the world was crashing down. Her own mum had passed away, her marriage was ending, and her baby boy Alex had been diagnosed with a life threatening condition.

“I was just so frightened,” she said. “Those first 12 months were the worst in my entire life. I don’t know how I made it through.”

Today, Alex is a cheeky and affectionate four-year-old – he loves frogs and frog noises and enjoys watching the neighbourhood dogs going for a walk.

Alex has Smith Lemli Opitz Syndrome, a rare genetic condition, that affects the organs and can cause severe intellectual and behavioural difficulties.

Sam’s referral to Acorns came at the perfect time. She had been going weeks without proper sleep, juggling home life, caring for Alex and looking after young daughter Elisabeth, below right with Acorns Sibling Worker Jess.

Sam said: “I didn’t believe that there were actually people out there that could help me. I genuinely don’t know what I’d have done without Acorns. I didn’t know how much longer I would have been able to live like that. They literally lifted me up from rock bottom.”

Sam’s first visit to Acorns in the Black Country was an experience she describes as ‘simply amazing’.

“It just took away all the pressures of the life and gave me a break,” she said. “It just doesn’t feel like a hospice, and it’s so comforting when you get there. All the staff who work there are amazing, and they’re always so friendly and kind.”

Now Acorns is an important part of the family.

“Acorns has helped me in all aspects; emotionally, physically and mentally. They got involved when I was at my absolute lowest and was physically and mentally exhausted. They just scooped me up and helped get me back on the straight and narrow. They are brilliant,” she added.

While the future for Alex is uncertain, Sam is determined to ‘make the most of every single day’; and with the help of Acorns, they’ll do just that.

It costs £30,000 each day to provide Acorns lifeline care and support for families like Sam’s. This Leap Year, make your extra day count by helping us ensure our care never takes a day off.

We need to raise an additional day’s funding to cover the cost of its services on 29 February.  

With your help, we can make sure families caring for a child with a life limiting or life threatening condition never face their journey alone – not just this Leap Day, but every day.  

Visit acorns.org.uk/extraday

“I genuinely don’t know what we would’ve done without Acorns. The shock of a second child who was so profoundly poorly. I don’t know whether Jo and I would have survived that.” – Sam Williams

A parent never imagines that one of their children will receive a life limiting or life threatening diagnosis. But this became the devastating reality for husband and wife, Sam and Jo Williams.

In March 2020, against the backdrop of national lockdown, the couple from Kings Norton, welcomed a beautiful baby boy.

It was a time of celebration for the family, who less than a year before had tragically lost their beloved son Ben to a brain tumour. The proud parents named the new arrival Reuben, in Ben’s memory.

Soon however, the Williams’ world was turned upside down once again. Not long after being born, Reuben was diagnosed with a serious life limiting condition, completely unrelated to Ben.

#BensWorldCup

In 2018, the family’s story had captured the hearts of the nation. A video of Ben being presented with a replica World Cup in hospital had gone viral, and #BensWorldCup was trending on Twitter.

The video caught the attention of England captain Harry Kane who was competing in the World Cup at the time. Within a few weeks, Ben was appearing at Wembley as a mascot for England’s game against Spain.

Capturing the heart of a nation – Ben enjoys an ice-cream.

The publicity created a whirlwind of excitement; a positive distraction for the family and footy-mad Ben who was undergoing gruelling treatment for a rare brain tumour called glioblastoma (GBM).

Just a few months’ earlier, life was very normal for the Williams. But it was at Ben’s fifth birthday party that mum Jo first remembers noticing things about his behaviour that seemed odd.

She says: “Ben had a big party, lots of excitement. He’d spent about two hours bouncing on a bouncy castle, waiting for his friends to arrive.

“There were a few things about how he was behaving that day that made me think. I thought maybe he’s under the weather, or just tired at the end of a school term.”

Ben was in reception class and as the Spring term was ending, the family noticed he seemed run down. His speech changed, as if he had a cold, and Ben’s teacher commented on how distracted he appeared in school.

Facing the unknown

With increasing concern, the Williams took Ben to see a doctor who advised they go immediately to A&E at Birmingham Children’s Hospital.

Jo remembers how scared the family felt, as they faced the unknown: “I think by then panic had started to build because his behaviour was so different. We went to have a scan, and I could tell it was going to be big. The next thing is, we’re talking that it’s likely to be cancer.

“It was going to be a battle. Those were the words that the doctors used. It was going to be a fight. Things escalated really quickly after that.”

Ben underwent a biopsy and the family were called to a meeting at the hospital to discuss the results.

Dad Sam says: “They talked us through what they’d found and said it was a glioblastoma. Ben’s consultant said the outcome was ‘dismal’.”

Ben was put on a gruelling course of treatment that took over the family’s life. There were daily trips to the Queen Elizabeth Hospital in Birmingham for radiotherapy and Jo and Sam administered chemotherapy at home alongside numerous other drugs to help manage his condition. By the time the treatment started, Ben had lost the ability to walk and talk.

Sam says: “It was bleak. It was tough. But we never allowed ourselves to believe that we couldn’t save him. That was true right up to the end.”

Ben with his World Cup trophy.

Going viral

Soon however, Ben started to turn a corner and the family saw positive signs that the treatment was making a difference.

Sam recalls a pivotal moment that unbeknownst to the family would lead to worldwide attention: “It was during the World Cup in 2018 and we were on the way up to the Children’s Hospital for an oncology meeting. Ben was sat in the back of the car, and we were chatting away to him.

“Up to this point he hadn’t really got his words back, then in the back of the car we’re talking about the football and Ben just said, ‘I want the World Cup’.”

At the hospital, Sam told the medical team what had happened and thought nothing more of it. Then, on Ben’s last day of radiotherapy treatment, a surprise awaited.

Sam remembers: “All his hair had gone, but he was walking and talking really confidently, with a big smile back on his face. A lot of the symptoms we’d seen before had settled down. We went in for Ben’s last session and the place was adorned with England flags. They were all wearing England kits and they presented him with a replica World Cup.”

A video of the heartwarming moment was shared on Twitter and quickly went viral. In the evening it had 10,000 views, but by the time the family woke up the next day it had over two million – and the story had been picked up in America.

Sam remembers how the story snowballed: “It was one of the later stages of the World Cup. Harry Kane spoke about Ben in a press conference. Jordan Pickford talked about it, calling Ben an ‘inspiration’.

“It was amazing that Ben was being talked about by an England team preparing for one of the biggest games of their lives. Things went mad for a bit. It was really good because it gave us some positivity, some excitement.”

Mum Jo says: “It felt like a film, and we were characters being swept along. It felt like we were winning. It was a bit like we were the England team, Ben was the underdog, defying expectations. We thought ‘he’s going to turn this around’.”

Things felt like they were falling into place for the Williams. Ben’s response to the treatment was positive and doctors seemed genuinely surprised at the progress he was making. Dad Sam went back to work and Ben was able to return to school.

Sam says: “We thought we were winning. We started to plan for life after Ben’s treatment. That feels naïve in some ways now, but that positivity meant that Ben never, ever had any idea of the possible negative outcomes, because we didn’t even countenance it.”

Referral to Acorns

In November 2018, the family noticed signs that Ben’s recovery was stalling. By Christmas, Jo and Sam knew that something was seriously wrong and on the 27th of December, ended up in A&E with Ben. Ben’s cancer had ‘come back with a vengeance’.

More radiotherapy followed and the family managed to get Ben accepted on a medical trial.

Sam added: “Even then we were thinking there was going to be a magic wand, a silver bullet. Just a month before he passed, we were at our friends’ wedding and he was there with his suit on dancing, with a constant smile.”

Sadly, Ben’s condition began to deteriorate. A consultant from the Hospital recommended the Williams make decisions about where he would spend his final days. The family decided to bring Ben to Acorns hospice in Selly Oak, Birmingham for end-of-life care.

Sam recalls bringing Ben to the hospice for the first time: “We were at a level of nursing with Ben that was beyond our skill set. Then to come to Acorns and just give that box of medicines away. The staff said: ‘don’t worry about any of that’. They said: ‘just be parents’ and we hadn’t been ‘just parents’ for a long time.”

At Acorns, every need was taken care of, so Jo and Sam could concentrate on making the most of every precious moment with Ben.

The family were given the opportunity to have loved ones around them in a way that would never have been possible in hospital; something that holds immense importance as they look back.

Sam says: “The thing I hope Ben was aware of was that he had lots of people around him. All our friends, all our family came. I remember they were outside, having a picnic in the hospice gardens. So you have these two extremes of life. Ben was amongst that.”

Ben died at Acorns after just three days, on 17th May 2019, less than two months after his sixth birthday.

Dad Sam says: “I don’t know what we would have done without that service, without Acorns. I can’t believe there are places still around the country that don’t have access to organisations like that. Genuinely, it’s beyond my belief. I don’t know how anyone would cope.

“That was our first introduction to Acorns, and a tragically sad one. I never thought we’d have to go back there again and use them again.”

New arrival

In March 2020, less than a year after Ben had passed away and as the world was facing the reality of a global pandemic, the Williams celebrated the arrival of baby Reuben.

Reuben was the ‘perfect little baby’, but Jo and Sam soon noticed things that concerned them. He was having problems feeding, and at one point admitted to hospital with jaundice. Numerous tests and further hospital trips followed.

Then one night after a feed, as Sam was settling Reuben on his chest, his baby boy had a seizure. The family had experienced similar episodes with Ben and recognised straight away what was happening.

Reuben was rushed to Birmingham Children’s Hospital A&E. It was in the Children’s Hospital – a place they had been so many times before with Ben – that the family heard the devastating news that Reuben had a serious life limiting condition.

Reuben was diagnosed with epileptic encephalopathy, a rare genetic condition, completely unrelated to his brother Ben’s glioblastoma.

Sam says: “It’s at this point where we’re being told that we have a life limited child. For us to hear that a second time, it just floored us. It floored us almost into inaction.”

Reuben remained in hospital where his condition took a turn for the worst and doctors again recommended the family go to Acorns for end-of-life care.

Reuben wins an Olympic Award at Acorns.

The family were faced with the unimaginable scenario of losing a second child, but this time they knew that at Acorns, they were in safe hands.

Sam says: “There was relief that we’d be able to go to Acorns, where we knew that whatever happened, Reuben would be really well looked after.”

Amazingly, after two months at Acorns for the Three Counties in Worcester, against all the odds, Reuben’s condition stabilised and he was allowed to go home.

Today, three-year-old Reuben has highly complex needs and requires round the clock care. He is unable to walk or talk and is fed via a tube directly to his stomach.

‘Spa weekends’ at Acorns

Reuben visits Acorns hospice in Selly Oak regularly for short breaks, which Jo and Sam affectionately refer to as his ‘spa weekends’. The visits help give the Williams a break and mean they can focus more on Reuben’s big sister Lydia (7).

Dad Sam says: “It’s like an extension of the family. when Reuben goes into respite, we say ‘you’re going to stay with your aunties and uncles’. The nurses there, the way they look after Reuben is just beautiful.”

At Acorns the Williams have access to a wide range of services that the family now say they couldn’t live without. Lydia accesses support through the Acorns Siblings service and the family also receive care in the home from the Acorns Outreach team.

Whatever happens, mum Jo knows there’s always someone at Acorns she can talk to who understands.

She says: “Acorns is always at the end of the phone. We have this incredible family support worker, Fiona, who is always there to listen to me, any time I feel things are overwhelming me.

“It’s a place where I know I can talk about anything. I can talk about Ben, I can say Ben’s name and nobody looks awkward. It’s like a little bubble. That’s not always the case in the outside world.”

The Williams never imagined they would ever have to use a children’s hospice, but at the darkest point in their lives, Acorns stepped in.

Jo says: “At first, we didn’t want to be that family, to accept that we needed Acorns. I was scared of places like Acorns. It was something to fear. But when the unimaginable happens, they are just incredible.”

Dad Sam agrees: “Before Ben, before Reuben – when I drove past Acorns hospice in Selly Oak, I’d almost want to put blinkers on, because I didn’t want to think about what’s happening in there. It’s a place that for many people is synonymous with really sad things.

“And yes, for us our first experience was hugely tragic, but now it’s about life with Reuben, enabling him to have as full a life as possible.”

The Williams’ lives are now fully intertwined with Acorns and to them it’s inconceivable to imagine a world in which they didn’t have access to that support.

Sam says: “I genuinely don’t know what we would’ve done without Acorns. The shock of a second child who was so profoundly poorly. I don’t know whether Jo and I would have survived that, and what it would’ve meant for Lydia.

Jo adds: “I think Acorns is for us, the difference between sinking or swimming.”

The Williams are just one of nearly 1,000 families Acorns cares for every year across the West Midlands and Gloucestershire.

Every single day across the region, highly trained Acorns professionals make a profound difference in the lives of mums, dads, brothers and sisters, giving them the strength and resilience they need, in the face of some of the most challenging situations life can throw at them.

Stronger Together at Christmas

Jo and Sam are now sharing their story as part of Stronger Together at Christmas, the Acorns Christmas Appeal. It’s an appeal which aims to raise much-needed funds for the charity, which relies on donations and fundraising to continue.

For Dad Sam, the importance of children’s hospices like Acorns, and the need for local communities to support their vital work, cannot be overstated.

He says: “For an organisation that deals ostensibly with dying, the amount of lives that Acorns saves probably goes under the radar. They literally save lives. Preventing suicide if we’re going be brutal.

“The enjoyment, the hope, the family life, the support. Maybe that’s the thing that people don’t fully understand; that rather than being a place that solely manages dignity in death, Acorns manages the continuation of life.

“That’s probably, ultimately, its biggest power.”

To donate to the Acorns Christmas Appeal, visit www.acorns.org.uk/christmastogether

The Williams family are now sharing their story as part of Stronger Together at Christmas, the Acorns Christmas Appeal

Grayson was a beautiful baby, with deep blue eyes and a perfect smile. For mom Becky and dad George, he was their ‘little miracle’. But on one devastating day their world was turned upside down and they were forced to make heart-breaking decisions that no parent should ever have to make.

That’s when Acorns stepped in and helped them make every moment count.

“Grayson was our little miracle baby. He was perfect, absolutely perfect. He really was the most beautiful baby, he looked just like a cherub.”

Becky and George smile through tears as they remember their beautiful baby boy Grayson Brittain-McMitchell and some of the wonderful memories they shared – but also reveal the devastating day when everything changed.

Becky said: “Grayson was just perfect. You could just watch him while he was sleeping, or when he was playing. You could just watch him for hours and you’d never get bored. Ever.

“He was our miracle, we tried to conceive for six years. We had a miscarriage at the beginning followed by years of infertility and failed IVF at the end, then six months later I fell pregnant naturally.

“Then one day, while we were changing his nappy, he just suddenly stopped breathing.”

By the time the ambulance arrived dad George had given rescue breaths and little Grayson seemed to be back to normal. The family were still taken straight to A&E, and that’s the day Grayson’s frightening seizures began.

Becky said: “He went from being a normal, healthy baby in the morning to just having seizure after seizure after seizure. And they weren’t typical seizures, they were the kind where he would stop breathing.”

Frightening medical tests followed to determine the cause of the seizures before Becky and George were finally given devastating news.

The new parents were told their precious son had a very rare condition that affects only one in 40 million called Vanishing White Matter Disease.

Grayson was given only a short time to live – ‘days, weeks or months if he was lucky’.

Vanishing White Matter Disease is a genetic brain disease that affects the nervous system for which there is currently no cure. It is usually diagnosed in very young children, but can occur in adulthood, and is characterised by the degeneration of white matter in the brain.

Becky and George smile through tears as they remember their beautiful baby boy Grayson

“It was at that point we knew we had a choice. We could either spend the rest of Grayson’s life in hospital with him, or we could do as much as we could do to equip ourselves to take him home and spend that time with him as a family.”

“There was never a point – and when I say never point, I mean, not even a second – that one of us wasn’t with him. He was never alone.”

There were many magical memories with Grayson, and some of the family’s favourite moments were spent with him playing with his baby gym, bath times, reading story books together, and looking super cute in his ‘Babiator’ sunglasses.

Becky said: “Whenever you put a baby gym in front of him, he just had this look of mischievousness in his eyes. He always had a smile on his face, and you always knew that he was he was really enjoying himself. We bought a little ball pit, and it was like magic to him. There was a mirror on it, and he could see himself and I just remember the look of wonder. Everything about him just screamed happiness.”

She added: “We also bought him these cute baby sunglasses, and we took him out into to my mum and dad’s garden. He was so contented, and you could tell he really loved being outside.

Every memory was our favourite. He was amazing.”

Becky and George holding a birthday cake for Grayson’s 6th month birthday.

Sadly, as Grayson’s condition worsened, Becky and George made the heartbreaking decision about where he would spend his final days, choosing to bring him to Acorns for the Three Counties in Worcester, for end-of-life care.  By this time, tiny Grayson was having as many as 50 back-to-back seizures a day.

Becky said: “Acorns was phenomenal, and even now coming to the hospice feels like I’m coming home. They were able to make him as comfortable as possible there. It meant we could spend every single second with Grayson.

“You can tell that people at Acorns genuinely care – they cared for Grayson and they cared for us, and they still do. They have been so crucial and we were able to able to trust them completely.

“They even did our washing for us. We were able to shower every day, and it was almost like a luxury for us to be able to do that. We were able to take a bit more care of ourselves, which I think probably helped us to continue to care for Grayson the way we did.

“But we had really good times, there is happiness when you are at Acorns and we made some really magical memories. The animal man came to visit and the chef baked him a cake for his six-month birthday. Acorns made us feel less alone.”

Grayson’s condition progressed to the point where he had lost the use of his arms and legs. Heartbreakingly, beautiful Grayson finally lost the ability to smile.

Becky said: “Grayson laughed so much, he was just so talkative and I think the hardest thing was watching him go from this happy, vibrant baby to, bit-by-bit, just lose the ability to do something like smile then he lost the ability to even make a noise. That was possibly the worst thing about the condition. He was losing everything, but he knew it was happening.”

Grayson stayed at Acorns for five weeks before he passed away in the early hours of the morning in the loving arms of his dad George with mom cuddling him. Acorns dedicated nursing team supported Becky and George to say goodbye to their beloved son in their own time.

He was aged just six months and seven days old.

“When Grayson died, we just wanted more time with him,” Becky said. “The nurse came in and said, ‘you can spend as much time with him as you want. We won’t take him away from you’.

“They organised the cuddle cot for us immediately and helped us, so we were able to still be with him. We remained at the hospice with Grayson for a further week after his death, with him staying in the special bedroom.”

Becky and George are sharing their story as part of Acorns Celebrate Your Star campaign, which gives people the chance to remember those who are loved and missed this Christmas in return for a small donation towards the charity’s lifeline care for local families.

Becky holding sleepy Grayson as he takes a nap.

For each tribute, a beautifully handcrafted star will be hung on a Christmas tree at their nearest Acorns hospice. A second star will be sent to the individual making the tribute to display at home.

Becky said: “Trying to change the perception of hospices is really important, so if we can raise awareness of the work that Acorns does, and if just one person chooses to make a donation, that’s all because of Grayson.

“This appeal gives everyone the opportunity to give to a charitable cause in his name and other children like him. Personally, it brings us so much comfort to talk about Grayson and to celebrate him at any given opportunity, and I like to think that he would be really proud of us.

“We’ve always said, it would be an injustice for us to give up on life, so to do things like this is our way of promising him that we won’t give up. We will make it through, and we will carry on, even on the days we don’t want to.

“Even though Grayson isn’t here anymore, we really want him to still be able to make a difference in the world.”

Becky and George are among the nearly 1,000 families supported by Acorns Children’s Hospice each year.

Acorns Children’s Hospice provides specialist palliative care for children and young people with life limiting and life threatening conditions and support for their families.

In the past year, the charity has cared for more than 730 children across Birmingham and the wider West Midlands, and almost 1,000 families, including those who are bereaved.

Acorns needs around £30,000 each day to provide its children’s hospice care, with two thirds of that amount coming from generous donations and fundraising by the local community. Consider making a donation today to help us be stronger together.

It was the darkest time of their lives, but with the help of Acorns Children’s Hospice Tony and Zoe Atzori created a lifetime of memories with their little boy Luca, before he died peacefully asleep in their arms.

Baby Luca Atzori was less than a year old when he was diagnosed with Tay-Sachs disease, a rare inherited condition that stops the nerves from working properly and for which there currently is no cure.

He died in the arms of his mum Zoe and dad Tony aged just two while he slept peacefully at Acorns in Birmingham.

“Forever grateful”

The couple say they will be forever grateful to the team of specialist Nurses and Family Practitioners at the hospice for supporting them throughout the ‘darkest time of their lives’.

“We’ve got such lovely memories of things we did with Luca because we literally packed a lifetime of stuff into a year,” Zoe and Tony said. “Because we knew that it wasn’t going to be that long. I’m so glad we did that.”

Zoe and Tony are among those remembering someone special this summer as part of our Acorns Dandelion Appeal. It gives loved ones, friends and charity supporters the opportunity to dedicate a beautiful, limited-edition Dandelion to help local children and their families.

Each Dandelion, will then be included in our special Garden of Wishes in a moving spectacle which will see hundreds of these stunning bespoke sculptures fill our garden at Acorns for the Three Counties in Worcester – all representing someone who is loved and missed.

Luca Atzori and family gathered on a sofa smiling fondly at a baby picture

“We will always try and do our little bit to help,” Tony said. “We’re eternally grateful for all the support we were given at Acorns. They helped us in our darkest moment.”

Luca's parents sitting in a dandelion field holding a metal dandelion replica

Tay Sachs disease

Zoe and Tony welcomed their second child Luca on 11 November 2010. It was a ‘lovely surprise’ to have a boy after having daughter Ella.

But it was during a trip to see Tony’s family in Sardinia when Luca was just nine months old that his aunt picked him up and instinctively knew there was ‘something wrong’.

“She said, ‘oh you know, he doesn’t feel that strong’. Luca never sat up and she said at his age he should be holding his back straight. She told us to take him straight to the doctors when we got home to England. She had that instinct,” Tony said.

It was just a day after they got home that Luca suffered a prolonged seizure and was taken to hospital. A child infection was initially thought to be the cause, and he was discharged home but when Luca suffered a second seizure he was re-admitted.

It was first thought Luca had spinal muscular atrophy but after further tests, just three months after his first birthday, he was diagnosed with Tay Sachs disease, a rare and life limiting condition that mainly affects babies and young children.

The diagnosis came during an appointment with a genetic specialist who ‘knew straightaway’, Zoe said.

“We remember every single second of that day – our lives changed forever. I would have given an arm to change it.

That’s when Acorns stepped in.

Zoe said: “Acorns helps to make your experience as stress free as possible. But at the same time, subtly supporting you in navigating through difficult situations.

“We had a community nurse come and see us. I just remember being really overwhelmed by everything. It took a while to get our heads around it. And then we thought, you know what, we need to just kick the hell out of life for him. So, we made loads of plans, did loads of stuff and made loads of memories.”

Support from Acorns

Acorns in Birmingham was not at all how Zoe and Tony imagined it to be. Instead, it was ‘really homely and child friendly’. The family went on excursions with Acorns and took part in many family, memory-making activities.

As Luca’s health deteriorated, a community nurse suggested the family should come to stay at Acorns.

“No-one ever said that that was it,” Zoe said. “You know, that was going to be the end of his life, and it never felt like that. I remember in the middle of the night, they were tending to him and we were on a sofa bed. And they said, ‘why don’t you get him into bed with you’.

“I’m really grateful they did that, I really am, and I can’t thank them enough for just gently telling us without us realising, saying ‘this is it, hold him tight’. We were with him when he took his last breath. He died in our arms.”

The family stayed at Acorns for a week after Luca died, while our specialist Nurses and Family Practitioners ‘thought about all the stuff they didn’t want to’.

Zoe said: “Luca was in the special bedroom for a week. It gives you the chance to say goodbye. I remember putting him in a cute little outfit and reading to him every night for that week.

“When you’re delivered a diagnosis, you don’t think that you’re going to have to plan your child’s funeral, but we did, and Acorns helped.”

Acorns helped them to choose a Peter Pan coffin too, a theme Zoe and Tony liked because he was the ‘boy who never grew up’.

Zoe said: “Acorns gave us a Memory Box. We took a lock of Luca’s hair, did some footprints and handprints. Looking at these keepsakes now it feels warm and fuzzy. All the pictures and all these things have happy things attached to them.”

Zoe and Tony went on to have another daughter Fran. They talk about Luca openly now to both their daughters, and there are keepsakes in the house, such as a memory blanket made from Luca’s clothes and cushion covers too, along with the many photographs and Luca’s toy monkey.

“I think if people understood what Acorns is really about, and how it’s not scary at all, it might encourage more people to access the services. We have so many happy memories connected to Acorns. It was a big part of our life, even though it was a very short time.”

Help support us

Hundreds of local babies, children and young people rely on Acorns Children’s Hospice for specialist 24-hour care and support. In turn, Acorns relies on people like you to fund the majority of our services. Your support with any charitable donation you can make is vital in helping us to continue the work that we do.

Donate Amount

 

For more information or for interview, photograph or filming opportunities, contact the PR and Communications team at news@acorns.org.uk.

Notes to editors:

Due to the sensitive nature of Acorns care services it refrains from using the words ‘terminal’ or ‘terminally ill’ in its press releases and public communications when describing the children who use Acorns and the conditions that they have. Instead, Acorns uses the words ‘life limited’, ‘life limiting’, or ‘life threatening’. Acorns kindly requests that you respect this in your communications when referring to Acorns Children’s Hospice. Acorns children have a lot of living to do. Thank you.

Being a first-time mum can be daunting for any parent, but when Sarah’s son Ethan suffered a catastrophic stroke during delivery her world changed forever.

It took another three months for doctors to discover its true impact, when a scan revealed half of Ethan’s brain had been affected. He has since been diagnosed with Lennox Gastaut Syndrome, a severe form of epilepsy which means he requires 24-hour care.

Sarah said, “They were quite amazed Ethan had survived. Nobody could tell us what would happen with him because in theory he shouldn’t have been with us.”

Sarah and her husband Kerry knew their lives would never be the same and with both having very small families, additional support would be vital. The couple found a lifeline in Acorns Children’s Hospice.

Despite their initial fears that a hospice would be ‘an unhappy place and a sad place’, it proved anything but and the family began their journey with Acorns after Ethan turned four.

“I was really surprised with what a happy place it was. I thought it would be sombre and grey and it’s not – it’s colourful and bright.

“Everybody is so lovely and it’s a home from home and they make it feel like Ethan is really important.”

Ethan visits Acorns in Birmingham for short breaks, which helps reenergise both Sarah and Kerry, and is a chance for them to recharge their batteries. It also gives Ethan, now 16, chance to spend time away from mum and dad and with other young people.

“It makes a huge amount of difference. Without Acorns we’d be exhausted – I don’t think we could do it without them.”

Since our Birmingham hospice opened it’s doors in 1988, gifts in Wills have played an important part in funding the specialist care provided by Acorns to children and young people like Ethan. With demand for services rising, gifts in Wills to Acorns have never been so important and ensures Acorns is always there for children and families that need us.

Find out more about gifts in Wills and how your legacy could help us be stronger together.

Bluebell is a little ray of sunshine.

Even as a baby the nurses at the hospital would visit to get their daily dose of Bluebell. She’s been on quite the journey in her short life, making her big smiles all the more precious.

Bluebell was born with exomphalos major, meaning some of her organs were on the outside of her body. This very rare life threatening condition affects just one in 5,000 babies born.

At Acorns, we are here to help Bluebell and her family enjoy time together in a safe space. Her mum Stella explains:

“We were in hospital for a long time after Bluebell was born. Doctors said we had to wait until she was one to operate so we had long stays in hospital and multiple times we were told to say goodbye. But Bluebell was strong and fought through.

“After her operation, Bluebell still required oxygen to help her breathe and was fed by a tube so needed nursing care at home. I couldn’t take her to the usual mums and toddler groups because we were in and out of hospital so much. And, if I’m honest, I wanted to keep her safe.

“It was our community nurse who referred us to Acorns. She recognised that we were becoming quite isolated and lonely.”

“I’ve honestly been amazed by the support that they offer at Acorns. Every staff member truly cares about you and your child, and they’ve built a lovely connection with Bluebell. It’s priceless having someone you can trust to look after your child when they need extra care.”

“They look after all of us in the family too. Before Acorns, we had been living our lives separately almost. My husband Mike and son Gabriel would do their own things together. Bluebell and I would do ours, our own meals.

“But at Acorns, we are able to do things as the four of us. We have been for hydrotherapy sessions in the pool. It’s wonderful to see Gabriel have time with his sister. It’s something just for them which is really special.

“The support has been invaluable for me as well. It’s been a lifeline to talk to other people. To provide constant care can be quite a toll on you. To talk to others in the same situation helps so much. Without those people and meet ups I would have felt quite lonely.

“As Bluebell has grown her speech, walking, eating, and drinking are all coming along, and the Acorns Nurses have been really supportive in all of these milestones.”

“The support Acorns has provided has helped Bluebell develop and given her the opportunity to do things that many two-year-old girls enjoy. She’s just an amazing little girl and we know she’ll do a lot with her life.

“I’m so grateful that Acorns has been there for us. The staff have been incredible and so caring. I can’t express in words what it means to have them there. I think we will just always be thankful that we have had them in our lives.”

Help support us

Hundreds of local babies, children and young people rely on Acorns Children’s Hospice for specialist 24-hour care and support. In turn, Acorns relies on people like you to fund the majority of our services. Your support with any charitable donation you can make is vital in helping us to continue the work that we do.

Donate Amount

 

For more information or for interview, photograph or filming opportunities, contact the PR and Communications team at news@acorns.org.uk.

Notes to editors:

Due to the sensitive nature of Acorns care services it refrains from using the words ‘terminal’ or ‘terminally ill’ in its press releases and public communications when describing the children who use Acorns and the conditions that they have. Instead, Acorns uses the words ‘life limited’, ‘life limiting’, or ‘life threatening’. Acorns kindly requests that you respect this in your communications when referring to Acorns Children’s Hospice. Acorns children have a lot of living to do. Thank you.

Six-year-old Oliver is a cheerful little chatterbox.

He always got a smile on his face even when he’s not well. And he loves dinosaurs.

Just weeks old, Oliver was diagnosed with stage five chronic kidney disease, a life threatening condition that meant his kidneys were close to failure and he would need a transplant. He was put on dialysis at five months old.

At Acorns, we are here to support Oliver and his family with respite stays, enabling his parents to take a much-needed break from providing non-stop care. Oliver’s dad John explains:

“We found out at our 20-week scan there was going to be some issues with Oliver’s kidneys. But we didn’t know the extent of the damage until he was born. He was diagnosed with stage five chronic kidney disease in his first weeks of life, which is the worst stage. Even though we knew there would be some challenges, it was a real shock to the system. We were living day by day.

“Oliver’s mum received a recommendation about Acorns. We never knew there were places like that available that could give parents a bit of respite. We were so glad Oliver met the criteria. We were so overwhelmed. We were back and forth in hospital for treatment and trying to keep on top of his medicines and care, it was constant.

“So to have that break and help was huge. When you’re caring for somebody else, sometimes you don’t look after yourself. It was nice to recharge and stop the world from spinning for a little bit and get back in control.”

Oliver making a cute face while holding a ball and sitting on the floor.

“There aren’t many people who can look after Oliver. It was hard for us to step back too and let somebody take the reins. We’d been doing it from day dot. But we knew the nurses at Acorns were fully trained professionals that could care for him and give us the break we really needed.”

Oliver smiling at the camera while sitting on the floor at an Acorns hospice

Two years ago, at four years old, Oliver received a life saving kidney transplant. Luckily, his dad John was a perfect match.

“There was never any question for me, if I could have, I would have given him both of them. He’s been to hell and back, but he’s come on leaps and bounds.”

As Oliver’s health continues to stabilise, he’ll no longer need Acorns. But his family remain forever grateful for the care and support they received when they needed it most.

“He is no longer life threatened so won’t need Acorns support in the near future, which is wonderful because he’s doing really well. But we will miss coming to Acorns because it is such a brilliant place.

“We’re so thankful Acorns exists. I don’t know where we would have been without it. Acorns was there when we really needed it. It’s an absolute a godsend.”

Help support us

Hundreds of local babies, children and young people rely on Acorns Children’s Hospice for specialist 24-hour care and support. In turn, Acorns relies on people like you to fund the majority of our services. Your support with any charitable donation you can make is vital in helping us to continue the work that we do.

Donate Amount

 

For more information or for interview, photograph or filming opportunities, contact the PR and Communications team at news@acorns.org.uk.

Notes to editors:

Due to the sensitive nature of Acorns care services it refrains from using the words ‘terminal’ or ‘terminally ill’ in its press releases and public communications when describing the children who use Acorns and the conditions that they have. Instead, Acorns uses the words ‘life limited’, ‘life limiting’, or ‘life threatening’. Acorns kindly requests that you respect this in your communications when referring to Acorns Children’s Hospice. Acorns children have a lot of living to do. Thank you.

Marwah is a happy, bubbly little girl, who has a great sense of humour.

She enjoys spending time with her family and especially likes parties and sparkly dresses.

Marwah has a condition called hyaline fibromatosis syndrome. It’s a life limiting condition that affects many areas of her body, including the skin, joints, bones, internal organs and gums.

At Acorns, we are here to help Marwah and her family make precious memories together and provide care from our hospice in Birmingham and in the family’s own home. This enables mum Nizet to spend time with her daughter as ‘just mum’. Nizet explains:

“Marwah’s birth was traumatic. I was induced at 34 weeks and that’s when the panic really started. Marwah wasn’t coming out and I was rushed into theatre.

“I was terrified but it did me good because I was able to deliver her myself. She was a perfect little girl, absolutely perfect. Everything seemed normal and we took our baby home.

“I started to notice something was wrong when I was getting her dressed. She screamed every time I lifted her arms. It wasn’t a hunger scream, it was pain. She wasn’t drinking milk properly either so she wasn’t growing like my other girls had as babies.

“For weeks doctors and midwives told me I was being paranoid. But I knew something wasn’t right. So I took her to A&E. I sat there and cried and cried. I refused to leave until a specialist came to see Marwah. Finally, someone listened to me.”

A Muslim mom with her young daughter whom is laying down.

“Test after test came back negative. Everything was ‘normal’. Because symptoms of her condition present later, there were no real signs.

“She couldn’t quite hold her head up properly, but she could talk, she was eating. Eventually, my husband and I were told to undergo genetic testing and we got our answer – hyaline fibromatosis syndrome.”

“As she grew, you could start to see some changes in her body; her hand features and other little things. Then as a year came on, you could see her face shape changing and she stopped doing things.

“We were told with her condition that as she grew, she would get worse and worse. Marwah is not able to sit up or turn over. She can hardy do most daily things. So it gets difficult for her. She is on oxygen to support her breathing and she requires constant care. At night, we have to get up in the night to turn her every 15 minutes. It’s always constant.”

An Acorns nurse caring for a young girl in her home.

“Acorns first came into our lives for hydrotherapy. It really helps Marwah and she loves the pool. Every time she has hydrotherapy, she sleeps through, meaning I don’t have to keep turning her. So, I get a full night’s rest too. I was literally like a zombie.

“I do all of Marwah’s care. She is too precious to me for me to let anyone else care for. But at Acorns I am able to let go. Now we have stays there. I am not ready for Marwah to stay on her own, but at Acorns you don’t have to leave your child. I get a rest from giving care and I’m just Mum. My girls come too, and their cousins join in family splashes. So we all get to have fun together.

“And Acorns comes to us at home. The Outreach service is amazing. Marwah loves her visits from Laura. Together they’ll plant seeds, make cakes, and paint. Marwah loves looking at her own work, and seeing the plants grow.”

“Acorns it’s not just a service. It’s part of my family now. I can go to anyone at Acorns and get help. I’d be lost without Acorns. I think I’d sit I’d sit and cry waiting and watching Marwah.”

Help support us

Hundreds of local babies, children and young people rely on Acorns Children’s Hospice for specialist 24-hour care and support. In turn, Acorns relies on people like you to fund the majority of our services. Your support with any charitable donation you can make is vital in helping us to continue the work that we do.

Donate Amount

 

For more information or for interview, photograph or filming opportunities, contact the PR and Communications team at news@acorns.org.uk.

Notes to editors:

Due to the sensitive nature of Acorns care services it refrains from using the words ‘terminal’ or ‘terminally ill’ in its press releases and public communications when describing the children who use Acorns and the conditions that they have. Instead, Acorns uses the words ‘life limited’, ‘life limiting’, or ‘life threatening’. Acorns kindly requests that you respect this in your communications when referring to Acorns Children’s Hospice. Acorns children have a lot of living to do. Thank you.

Harry and George are two of the cheekiest, most sociable boys.

They love being noisy. The brothers both have a rare genetic condition. It’s so rare that there are only around 100 cases in the world.

They visit Acorns for the Three Counties for short breaks and respite stays, which gives their mum Liz and dad John time to recharge their batteries. Liz explains:

“I remember coming to Acorns for the first time with George and actually getting a little emotional. It was just so wonderful. Everyone was welcoming and they’d made George’s bedroom so personal to him.

“There was a little sign with his name on the door and it was so beautiful inside. The staff gushed over him too. It’s these little touches that really show how Acorns is a very special place.”

“Every single person at the hospice just cares so much. From the nurses, to the gardeners, to the chefs, they just want to help. You can tell that they would do anything for you and your child to bring a bit of happiness into your life.

“Knowing Harry and George are having a good time when at Acorns means my husband and I can relax and enjoy our time together whilst they are being cared for. We can just be us which is amazing.

Boy lay down on a large pillow with stars on it.

“We can use that time to be a couple and take our other son on trips, just the three of us. Something as simple as a lie in and staying in our pyjamas for the day just isn’t possible without Acorns there.

A young boy playing in bed at Acorns

“For me, life before Acorns felt quite lonely. We didn’t really have anyone to talk to who understood what it’s like to bring up a child with complex needs.

“By having an Acorns staff member there at the end of the phone who you can call at any time and ask anything has been a lifeline.

“Our Family Practitioner is always there for us and will help in any way she can. She always tells me not to hold back. To call her and ask for help if we need it. She has stepped in many times to help when things have been hard. She has helped bring feelings to a better place and has made stressful situations bearable.

“Some of these may sound like little things: a lie in, someone to talk to, a sign on the door. But to me and to Harry and George they are invaluable. It’s the little things that Acorns do that you didn’t know would change your life.”

Help support us

Hundreds of local babies, children and young people rely on Acorns Children’s Hospice for specialist 24-hour care and support. In turn, Acorns relies on people like you to fund the majority of our services. Your support with any charitable donation you can make is vital in helping us to continue the work that we do.

Donate Amount

 

For more information or for interview, photograph or filming opportunities, contact the PR and Communications team at news@acorns.org.uk.

Notes to editors:

Due to the sensitive nature of Acorns care services it refrains from using the words ‘terminal’ or ‘terminally ill’ in its press releases and public communications when describing the children who use Acorns and the conditions that they have. Instead, Acorns uses the words ‘life limited’, ‘life limiting’, or ‘life threatening’. Acorns kindly requests that you respect this in your communications when referring to Acorns Children’s Hospice. Acorns children have a lot of living to do. Thank you.

Like any little girl, Cara’s favourite thing is cuddles from mum.

If anyone holds her and she can hear her mum’s voice, Cara will make it very clear she doesn’t want anyone but her mum. Her second favourite thing is lights, she loves anything bright.

Cara has a condition called nonketotic hyperglycinemia or NKH for short. It is a rare genetic condition which prevents her little body from processing glycine and means she has complex needs and severe developmental delays. She also has acute seizures and can experience as many as 30 a day.

At Acorns, we are here for Cara by providing specialist care in a way that makes mum Vicky feel safe and heard. We also support Vicky to enjoy precious moments to herself. Vicky explains:

“When I was pregnant with Cara, she constantly had the hiccups. I didn’t know at the time, but it can be a sign of NKH. Once she was born, I had a feeling something wasn’t quite right in the first few days. She wasn’t eating properly, all she would do was sleep and I hadn’t heard her cry since delivery. It was the most frustrating thing. I was just being brushed off as a new mum.

“But by day three, as my mum and I gave her a bath, she had no reaction whatsoever to the water. She was really floppy too. I called 111 and they sent an ambulance. The paramedics weren’t happy with her breathing or how floppy she was and took us to our local hospital.

“They carried out tests and her little feet were pricked all over. But she didn’t flinch. She didn’t cry. She was tested for sepsis but it came back negative. A lumbar puncture told us it was NKH.”

“But she fought. We were told not to get our hopes up, but she continued to stablise and we were able to take her home.

An Acorns nurse sitting with Baby Cara in a sensory room, surrounded by soft purple light

“And she’s still here. We celebrated her first birthday, which was just incredible – from being told she wasn’t going to survive to still being here. She’s still fighting and she seems happy.”

“We learned about Acorns while we were in hospital. That it was a place we could get some support and care for Cara while I had some time to myself. I admit I was skeptical about it at first, but Acorns is brilliant. People don’t realise how much a place like Acorns can help you. We have stays together at the hospice and nurses come to our home.

An Acorns nurse with Baby Cara in a baby chair, enjoying the sunshine

“I know the nurses at Acorns can care for Cara properly and I’m so grateful for that. I’m included in everything, every decision, every conversation and I’m never judged. I feel heard. Acorns really takes to the time to learn about the child and the family, not just the diagnosis.

“I trust the people at Acorns and even though I’m not ready yet to go and leave her there, I know it’s an option if it’s needed.

“They help me too. They allow me to talk and basically get anything off my chest. It’s helps me more than I can say, it’s like a therapy session. Without Acorns I’d be miserable because I wouldn’t have much time to myself and I don’t really have anybody to fall back on.

“When the Outreach nurses visit us at home I get the chance to do simple things like have a long shower. They also know that memories are very important to me so whenever possible, they’ll make cards and crafts with Cara that I can keep forever.”

Help support us

Hundreds of local babies, children and young people rely on Acorns Children’s Hospice for specialist 24-hour care and support. In turn, Acorns relies on people like you to fund the majority of our services. Your support with any charitable donation you can make is vital in helping us to continue the work that we do.

Donate Amount

 

For more information or for interview, photograph or filming opportunities, contact the PR and Communications team at news@acorns.org.uk.

Notes to editors:

Due to the sensitive nature of Acorns care services it refrains from using the words ‘terminal’ or ‘terminally ill’ in its press releases and public communications when describing the children who use Acorns and the conditions that they have. Instead, Acorns uses the words ‘life limited’, ‘life limiting’, or ‘life threatening’. Acorns kindly requests that you respect this in your communications when referring to Acorns Children’s Hospice. Acorns children have a lot of living to do. Thank you.