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.

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.

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 a little girl 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 an infant 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.

 

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.

It was June and Willie Sayce’s family solicitor who planted the seed for what would become an incredible lasting legacy for the philanthropic husband and wife and a lifeline for local children and families.

Acorns Children’s Hospice had been searching for a new home in Worcester, and June and Willie were inspired to act, donating land that would grow into the Acorns for the Three Counties we know today.

The generous local couple had been approached numerous times over the years by developers with offers for their plot. But selling the precious land the family had farmed for years wasn’t an option for them.

The timing was perfect for June and Willie and in learning of Acorns plans, long discussions led to the couple donating paddocks they used for keeping donkeys behind their home in Bath Road to the charity. Worcester businessman and fellow philanthropist Cecil Duckworth CBE agreed to buy the frontage land and the sites were brought together to enable construction on Acorns third hospice site to begin in 2001.

Part of the Acorns family

Sadly, just weeks after the project commenced, Willie passed away. But June continued to take pride and pleasure from watching the progress of the project as it fulfilled their shared dream. The joy continued when the hospice was finally opened in 2005 and June was a frequent visitor, taking part in many of our celebrations and events.

Mrs June Sayce was truly a part of the Acorns family playing a pivotal role alongside husband Willie in enabling us to establish a hospice in Worcester. As the facility became a home from home for thousands of local families, June celebrated each of its birthdays in June, joining our colleagues and volunteers to mark the occasion.

And who can forget Sally and Dotty, the beloved donkeys June saved and nurtured, who too became part of the family and loved by everyone at Acorns. They were a key feature of June’s life and lived out their days in their paddock right next door to our hospice much to the joy of children and families.

In fact, June often remarked how seeing the delight and wonder on the children’s faces as the beloved animals stretched their necks over to greet them, was one that would remain with her always.

June Sayce with respectable members of the Worcester community upon the opening of Acorns hospice in Worcester.

June was constantly involved with Acorns

As June sadly became more frail, Three Counties colleagues felt privileged to support her, taking lunch for her each day. She was always interested to hear the latest news from the hospice and right up until her passing, she enjoyed laughing, joking and sharing tales with her family at Acorns.

June sadly died in October 2017 after many years of helping us to make every day count for local life limited and life threatened children and their families – all born from her love and generosity which still enables us to provide our lifeline care and support. She truly epitomised what it means for someone to experience the joy of giving and without June and Willie, Acorns for the Three Counties would not be the special place it is today.

Make a lasting impact through your legacy

Get started today and request a free Gifts in Wills pack, where you’ll learn more about our legacy program. Have your legacy live on through the vital care and support we provide children with life limiting and life threatening conditions.

Request your free Gifts in Wills guide
June Sayce with her beloved donkey on a farm she later donates to Acorns

Meet Ezra – a little boy with one of the biggest smiles. His mum Emily says Ezra ‘makes her laugh every day’. But behind that beaming smile and magnetic personality is a little boy with a very serious condition.

Ezra has a life threatening genetic disorder called congenital hyperinsulinism. This means his body produces dangerously high levels of insulin. As a result, he requires regular tube feeds, constant monitoring and medication to help stabilise his blood sugar levels.

Emily explains: “Ezra was born at full term. My eldest son Stanley wasn’t, so I was excited that I’d managed to have a full-term pregnancy. But then shortly after he was born, when we got him home, he wasn’t waking in the night to feed and when we went to pick him up, he was floppy.

A young boy named Ezra showing off his stuffed toy while at Acorns

“We rushed into A&E and they did a blood sugar test – it was really, really low and from then on, it was hospital stays and taking it step by step, and day by day.

“It was the easiest way to come to terms with everything, especially in those early days. You don’t know what your future is going to be with children like Ezra and you worry for them.”

Anyone who knows Ezra will have noticed that he’s always wearing a rucksack – this contains his medications, his feeds and his glucose monitor, which beeps when his blood sugar levels drop too low.

“We listen for the alarms and look out for any symptoms; if he’s bit wobbly on his feet or just showing strange behaviours and treat the low blood sugar. We always have to be vigilant and keep an eye out for him. If he doesn’t always respond, which has happened multiple times in his life, we have to call for an ambulance. It can happen really quicky, there’ll be no warning and he’ll lose consciousness.”

Ezra’s needs round-the-clock monitoring and as mum to this ‘very, very active’ little boy Emily admits it can be ‘full on’. Emily and her family have found a lifeline in Acorns Children’s Hospice, benefiting from various services at our hospice in Worcester, Acorns for the Three Counties, including respite stays.

“They indulge Ezra’s every whim at Acorns. They play with him and give him all their attention and all of that focus. He has the time of his life. He really looks forward to his Acorns visits.”

A young boy named Ezra enjoying hydrotherapy at Acorns Childrens hospice with a nurse

“And for me, it gives me a break. I get a full night’s sleep with no alarms and no thinking about medicines and it gives me quality time with Stanley.”

Acorns has now become part of the family and Emily couldn’t imagine her life with this vital care and support.  

“Without Acorns life would be bleak because it is so relentless. Acorns has supported me through so many things, even the long hospital stays when we’ve been miles from Acorns.  

“I don’t know what I would do without Acorns. It gives us time to recharge and I know Ezra is safe and having the best time and it’s meant such a great deal to us.”  

Jabran, staff nurse at our hospice in Birmingham feels humbled to work at Acorns.

For him, being able to bring tailored care and fun to the lives of children is his favourite thing. Here is his story:

I’ve been qualified as a nurse now for 10 years which is scary to admit! I started my career working in hospitals, so I didn’t know much about the hospice scene.

Before applying to work at Acorns I did a mini tour to see what it was like. It wasn’t what I thought it was going to be, it was actually a really fun and warm environment, so I applied for the job and here I am!

What I really love about my role is the time I get to give to the children and their families. On my first day, I spent the whole day caring for one child who I woke in the morning, bathed, took into the sensory room and the garden, ate lunch with in the dining room, and watched TV with whilst looking after their care needs.

A nurse at Acorns, named Jabhran, calculating the right dosage of medicine needed.

Jabran preparing medicine at our Birmingham hospice.

“It wasn’t rushed, it was calm. It was completely different to the busy hospital ward. That’s what’s nice about Acorns, you really do get that one to one care in a relaxing environment.”

We have time to care and to get to know the child and their family, which means we can provide gold standard care. Every child is different, so we make sure we know everything about them by building a personal care plan.

When a family first comes to Acorns, we invite them to stay so we can learn everything we can about their child.

Obviously, we focus on the clinical needs such as medication, but we also cover things you might take for granted. For instance, what time the child goes to sleep, if they wake up in the night, what kind of things would calm them down? What are their hobbies?

We then create a personalised care plan for when they stay. By doing this we can care for them as a whole.

Everything we do is tailored because we want the best for children and families. We try to understand as best as we can, what they’re going through.

I love this job because it’s humbling to be a part of a child’s journey. That’s why I want to make it as fun and unique to them as possible.

Jabran 
Staff Nurse

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.