Acorns is changing lives by reaching out and taking our children’s hospice care into family homes and into their own communities.

Mum Liga shares her powerful story and explains why there’s no-one else who can offer this vital support. She reveals how Acorns and the Outreach team has helped plan a major milestone for her daughter Laila – her first day at school.

The first day at school is a key moment in life that every child and parent should get to experience. But for mum Liga, it’s one moment she never thought her daughter Laila would have.

Laila has cerebral palsy and is blind. When not receiving attention, she can cause herself pain – and for mum Liga the thought of leaving Laila for a second, let alone a whole day at school, was terrifying.

But thanks to the help from our Outreach team, Laila will be starting school in the autumn.

A little girl gazes at some sensory bubble lights

“When you get help from Outreach, you don’t need to worry and it’s amazing. I have the confidence to do other things, when before I couldn’t even leave her side.”

Laila, now aged three, suffered bleeding while she was still in mum’s tummy, and was born tiny and in a critical condition. Her parents didn’t think she was going to pull through.

But Laila is a ‘fighter’ and she stayed at five different hospitals for 148 days before being allowed home. Life for the family changed completely and caring for Laila became a full-time job.

There were sleepless nights, and Liga felt she didn’t have time to do ordinary tasks that other families might take for granted.

A woman, boy and little girl sit beside a ball pool. They are laughing

Help couldn’t wait, and Acorns stepped in.

It’s been a gradual process where Outreach Nurse Laura has supported the family, caring for Laila to allow the family time for themselves, and to help Laila meet new faces in a way that has been comfortable and felt safe for her.

Liga said: “It’s been life-changing when you are constantly looking after her, and you don’t need to worry. It’s still strange for me to leave her, when you have a disabled child you think about the 100 things that could happen if I’m not there.”

Without the Outreach team, Liga says life would be ‘bad’. She describes them as ‘friends and family’. As well as home visits and professional care, they help her get to appointments. They also give Laila lots of cuddles, which she absolutely loves.

“She’s a fighter,” Liga said. “It’s changed our lives completely. Before I worried about paying the bills or about my hair getting wet. Now we live day-to-day and it’s a blessing.

“We couldn’t be without Acorns. There is literally no-one else, in all the community, that can offer this kind of support, not just for me, but for my partner, my son Davis and Laila.”

Liga added: “I was even too scared for her to go to a school, and they said they’d help her, and now every single month she goes to daycare for a whole day to help prepare.

“Thanks to Acorns I am looking forward to Laila going to school this year. It will be strange leaving her, and I can’t promise I won’t be sitting at the school gates and waiting for her to come out.”

If you ask seven-year-old Vinnie about his condition, he’ll tell you he was born with half a heart and that one day he’ll need a new one.

Vinnie has hypoplastic left heart syndrome (HLHS) and is in severe heart failure. In his short life, he has had three major, open heart surgeries to help stabilise his condition and preserve his heart. But he will need a transplant.

For parents Claire and Ben, keeping up with ‘such a ball of energy’ can be challenging. His condition means he has severe heart failure. But he doesn’t let that stop him.

“Vinnie is full of life,” says Mum Claire. “He’s very strong and knows his own mind. He’s a very big advocate for himself and his heart condition. We follow his lead. It’s not something he’s ever shied away from, he embraces it. It’s made him who he is.”

Vinnie’s parents discovered there was a problem with his heart during Claire’s 20-week scan: “We were told they couldn’t see all the chambers and then we had to wait a week to get an answer. I remember my husband literally carrying me out of the hospital. It was an incredibly lonely time. I think I stayed in bed for that entire week. I was beside myself.

A boy smiling at the camera with a gummy bear in between his teeth

“When we got the diagnosis, I’d had a scan and we were taken into a room. I saw the tissues and knew straight away it was bad news.”

“There were two cardiologists waiting to speak to us. They said that Vinnie had a condition called hypoplastic left heart syndrome (HLHS). To us, that was like a foreign language. But it basically meant Vinnie only had half a heart.”

After what Claire describes as a ‘very lonely but well pregnancy’ Vinnie was born.

“I spent a lot of it crying. I was so stressed and so worried We were thrown into a world that we knew nothing about, and it was very daunting. I had no baby shower. We didn’t buy a single thing. We didn’t know if Vinnie would survive the first open heart surgery which he’d need in a matter of days. I was too petrified.”

Tiny newborn Vinnie underwent the first of what would be three surgeries at just 48 hours old.

Young boy in a hospital bed with bandages and tubes after an operation
Vinnie after his third heart surgery.

“He was absolutely tiny. They say they work on a heart the size of a walnut. That’s how tiny it is.

“We had a smooth, journey after that first operation. He was thriving, so it was just about medications, feeds and keeping him safe in between surgeries. We were very cautious of who came to visit. I didn’t take him out anywhere in between surgeries.”

It was during this time that Claire and Ben were introduced to Acorns Children’s Hospice.

“We didn’t know that much about Acorns but when I thought of it, I was petrified of coming. I had that false idea of what Acorns was. It was a case of just going in and having a look because I didn’t know where we fit as a family.

“I always thought that it would be the most depressing place in the world, but it’s so far from it, completely the opposite. I would never be without them.

Acorns continues to be an important part of the family’s life. Vinnie visits Acorns in Birmingham for daycare, while Claire accesses support from her Family Practitioner Jo and attends the Acorns Mums Group.

“Vinnie loves his daycare visits, he literally runs wild doing all the activities he enjoys because it’s a safe place. He loves all the attention, it’s all on him, so it’s perfect. He has somebody to play with him the entire time.”

Having Acorns there whenever they need it is a huge source of comfort for Vinnie’s parents. For Claire and Ben, Acorns is a real lifeline; ‘a safe place, with real-life superheroes’.

“When Vinnie was little, Acorns was the only place I could go to because it was the only place I felt safe. It’s our only safe place even now – nobody can look after Vinnie. He can’t go to a friend’s house and play or stay over. But at Acorns he gets the care he needs, his medications and he’s safe.

“Acorns are the best babysitters in the world. He has so much fun there. I feel very lucky to be part of Acorns. The staff are real-life superheroes. It’s the most loving place with the nicest, friendliest people.”

A boy wearing an Aston Villa shirt with Calum Chambers from AVFC smiling at the camera
Vinnie with Calum Chambers from AVFC, his favourite football team.
A boy showing off his new AVFC jumper for Christmas
Vinnie showing off his special AVFC jumper.

Dudley Mum Sam Barklam reveals how support Acorns helps 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.

Help us be there when families like Sam’s need us

It costs £30,000 each day to provide Acorns lifeline care and support for families. 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.

Donate now

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, 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.

 

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.”

A little girl sits in a white toy car which has the Acorns hospice logo on the side

“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.

 

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.

 

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.

 

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.

 

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.