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.”

When a family feels alone… help us reduce their isolation.

Support our Outreach Appeal today so no family ever feels alone when they are caring for a child with life limiting or life threatening condition.

Help us reach out and be there for families who desperately need us – please donate today!

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A boy and a little girl laying on a large swing. Both are smiling

It was an epic feat that took friends Matt and George a staggering 40 days, 16 hours and an incredible 3,000 miles.

Without any assistance, the duo successfully rowed across the Atlantic Ocean in a stunning show of support for Acorns Children’s Hospice, which will see the ‘Worcester Buoys’ raise an incredible £115,000 for local children and families in memory of a very special young man.

The World’s Toughest Row

Matt and George launched their bid to conquer the World’s Toughest Row back in 2020.

So moved by the loss of Matt’s family friend Jack Dyer at aged 16, the duo wanted to do something special to celebrate Jack and help raise vital funds for the charity that supported his family throughout his life.

The inspirational teenager was at the forefront of the friends’ minds throughout their journey, from the moment they set off from La Gomera in the Canaries in December to the moment they crossed the finish line in English Harbour, Antigua, on 22 January.

Rowing in shifts of two hours on and two hours off was exhausting and relentless. It was a difficult and often nearly impossible time at sea.

Matt and George faced broken oar-gates, damaged safety equipment, seasickness and some of the worst conditions the challenge has ever seen. But still, they powered through, keeping positive and bringing the infectious energy they’re known for every step of the way.

More than anything, what got them up in the middle of the night to battle 8-metre waves, ‘force 8’ storms or 30-degree heat, was the knowledge that they were rowing for Jack and a fantastic cause.

For Jack

With his infectious laugh and heart-melting smile, Jack was well-known and loved by everyone who met him. Complications at birth led to Jack being diagnosed with cerebral palsy.

He began visiting Acorns for the Three Counties for short breaks when he was just nine months old.

Our Worcester hospice became a second home for Jack, his parents Dale and Sharon, and younger brothers Harry and Charlie.

Sadly, Jack’s health deteriorated in September 2020 and he was rushed to A&E, struggling to breathe. Although he had been in hospital before, it was clear that this time the situation was different.

After a number of weeks in hospital, specialists advised Jack’s parents, there was nothing more they could do for their son and he came to Acorns for end of life care.

Jack and his family spent nearly three weeks together at the hospice making precious memories before saying goodbye at Acorns in November.

Jack’s father Dale remembers those final few weeks:

“We did some amazing stuff. He loved being out in the garden, being able to see the trees and hear the birds.

“It gave us time with Jack. It was like he was saying: ‘I’ve had enough now – I’m going to give you time to get used to me not being at home – then I’m going to take a couple of weeks so it’s just me, mum and dad.’

“I felt it was almost like he made those decisions. It was like he was saying: ‘I’ve had enough now I want to go a different route.’

“The hospice allowed us to have the boys there as a family of five, so we could say our goodbyes.”

For Jack’s family, having Acorns there throughout his life and beyond has been a real lifeline.

Dale says: “There were two places that we felt that Jack was safest and happiest: at home, and at Acorns.

“It would have been a real nightmare with Acorns, I don’t even want to imagine it. If we hadn’t had the respite I don’t know where we would have ended up.

“What Acorns offers is physical respite but also mental respite – not having to think about things or worry – so you can actually go to sleep. In 16 years, I don’t think I ever had an unbroken night’s sleep.”

If Matt and George’s story has inspired you, you too can help us be there for children like Jack and their families

Rowing and race images credit to World’s Toughest Row worldstoughestrow.com

Benjamin Zephaniah, who sadly passed away on 7 December, will be remembered for being many things – a trailblazing poet, writer, musician, activist and of course, a proud Brummie. He was thought of so fondly by so many.

At Acorns, one of the things we will remember most dearly is the amount of pure joy he brought to children and families. His visits to our hospices over many years were always filled with smiles and laughter.

During an especially memorable Christmas visit to our Black Country hospice in 2019 he delighted children and families with poems, songs and stories. It was a wonderful to see faces light-up in his presence. Benjamin wrote warmly about the visit in an article for the Guardian.

It was at this visit that Benjamin formed a close bond with Acorns Ambassador, Assya Shabir. The friendship continued and the following year the pair were recorded in conversation for a feature aired on BBC Radio 4.

In 2021, Benjamin accepted our invitation to become a Patron and in 2022 he joined forces with fellow Acorns Patron Steven Knight for a Peaky Blinders themed charity event at the Symphony Hall, Birmingham.

Benjamin was someone who understood deeply our ethos. He understood that at Acorns, not only do families have all their clinical and emotional needs met, but it’s a place where they can create precious, lasting memories – in a world where the future can seem so uncertain.

In his own words, Benjamin said of Acorns: “I am so inspired by the kids, and I also have an enormous amount of respect for the people who work there. I want to hug and kiss them, I want to tell them how much I love them, but I just shake their hands and act normal.

“Not only do they care for these kids, some of whom are not expected to reach adulthood; they also look after their mums, dads, brothers and sisters, even grandparents. The existence of children’s hospices is something many of us feel uncomfortable with – most people tend to associate hospices with older people. I was one of them, until I first visited.

Benjamin Zephaniah and Assya Shabir.

“Those working and volunteering there do everything they can to make special memories for the children and their families. I have rarely been to a place where love, happiness and joy were so abundant. I have never felt a hint of doom or gloom.”

Benjamin had the ability to connect with everyone he met. He had a sincere heart for the vulnerable and saw all others as equals; precious and loved, regardless of ability or social status. This was one of his greatest gifts, and something all of us at Acorns will remember, long into the future.

A major project to completely transform a vital hydrotherapy pool and turn it into a magical multi-sensory facility for children with life limiting and life threatening conditions has officially begun.

The hydrotherapy pool at Acorns Children’s Hospice for the Three Counties, which received the royal seal of approval after it opened in 2005, is being given the six-figure upgrade to totally renovate the facility.

Alongside a brand-new pool and changing rooms, a sparkling hi-tech lighting system and ambient surround sound speakers will enhance hydrotherapy sessions, which are an essential service provided by the Worcester-based hospice.

The improvements have been made possible thanks to a £205,297 grant from the Kildare Trust and will benefit around 230 children who receive care at the Bath Road hospice every year.

Becky Hughes, Matron at Acorns for the Three Counties, said: “This exciting project will completely transform what is such an important space for children and families. Hydrotherapy actively reduces pain and gives children at Acorns a sense of movement that they wouldn’t otherwise enjoy without the freedom that water allows.

Work begins on the new pool
Workers on site as the new pool is created

An incredible project

“Our hydrotherapy pool is so well loved and used by families who rely on our lifeline care and support. Not only does it enable us to provide vital hydrotherapy sessions but also allows us to offer family splashes, giving them precious time together to provide magical memories which wouldn’t be possible for a child with complex care needs in a public pool.

“The incredible project would not be possible without the generous support of the Kildare Trust. Words can’t explain how grateful we are. The impact will be felt for years to come, and will touch the lives of hundreds of families.”

Hydrotherapy not only helps with pain relief and symptom management but can also help a child to develop their play and communication skills.

The pool helps children to be as active as possible, both physically and emotionally, and helps to create happy memories for them and their families.

The Kildare Trust, which was endowed by the late Phyllis Richards, a Worcester farmer who died in 2021 aged 100 years old, provides financial support to charities across Worcestershire and has funded the entire project.

Ian Smith, Chair of the Kildare Trust, said: “The Kildare Trust has supported the wonderful work Acorns hospice in Worcester does for a number of years. When we heard that the swimming pool was desperately in need of a major refurbishment, we wanted to help.

“On a visit to see the pool and hear about the exciting plans, we were introduced to a foster mother who explained what a massive positive impact the pool and the staff who provide the therapy has on her severely disabled son. We are delighted to have been able to fund the entire project.”

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 grants from charities like the Kildare Trust.

Find out how you can help Acorns be stronger together for local children and families by visiting our Stronger Together campaign.

Inspirational Pride of Britain winner and Acorns Children’s Hospice Ambassador Moin Younis was guest of honour at the House of Lords last week (Thursday 23 November) for a special charity event.

The event, organised by Hospice UK for supporters of the hospice sector, saw Moin share his story in a Q&A with Hospice UK CEO, Toby Porter, before taking questions from the floor.

Moin, 23, spoke powerfully about the vital work of hospices, how Acorns made a huge difference in his life and the memorable moment David Beckham surprised him at the Pride of Britain Awards.

He said: “I don’t think I’d be alive it wasn’t for Acorns Children’s Hospice, because the condition I have, it’s cruel, but every time I was going through something – Acorns was there to support me.

“Whether it was to go there for a week and get my mind off the pain, they were there. I couldn’t thank them enough for what they do.”

Toby Porter and Moin Younis at the House of Lords
Moin Younis and Toby Porter at the House of Lords

A profound effect on Moin’s life

Moin suffers from a rare and agonising genetic skin disorder, Epidermolysis Bullosa (EB), and up to the age of 18 – Acorns Children’s Hospice in Birmingham was like a second home.

The condition requires Moin to go through a lengthy and gruelling bandaging routine every single day. Despite this, he has dedicated his life to making a difference, inspiring others to make the most of life, regardless of their ability.

Moin has been an Ambassador for Acorns since he was a teenager, sharing at every opportunity how the charity has made a profound difference in his life.

It’s a role that has seen him recognised at the highest level. In 2017 Moin won a Pride of Britain award, through which he met David Beckham and Prince William.

The House of Lords event, a private briefing for Hospice UK supporters, was hosted by Hospice UK Vice President, The Rt. Hon Lord Howard of Lympne.  The event was aimed at highlighting the challenges the hospice sector is currently facing, in areas such as recruitment and the cost-of-living crisis – and share Hospice UK’s plans to address these issues.

Find out more about the campaigning work taking place by Acorns and our partners.

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.

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.