Little Patrick Harris has beautiful eyelashes, the cutest babble and suffered a brain injury when he was born suddenly and unexpectedly at the family’s home.
In the space of a few hours, Keri Harris and husband Andy went from expecting the arrival of a healthy baby to their lives being changed forever. Now they have bravely spoken out about their referral to Acorns Children’s Hospice – and what the charity now means to them.
Patrick, now aged two, was born breech, a term used for when a baby is born bottom first instead of head first. But, being at home, Keri had no medical assistance while waiting for the emergency services to arrive.
Keri said: “It’s all a blur. I was suddenly giving birth to a breech baby with absolutely no medical intervention at all, and the thoughts of having anything wrong with the child didn’t really come into my mind.”
When the emergency services arrived, little Patrick was rushed to hospital, and it would be several hours before Keri and Andy were allowed to see him.
It’s every parent’s nightmare – they were told to prepare for the worst.
Keri said: “The following hours and days were critical and I think the hardest part was that you couldn’t hold him, with all the wires and tubes and beeps from the machines.
“You keep hearing the words brain injury, and seizure, and you keep hearing other words you don’t understand, but nothing is really explained.
“And then all I remember is hearing the words ‘children’s hospice’, and you instantly think the worst. I had learned, when I was young, that it was a place where children go to die.”
Over several weeks Patrick fought for survival, but Keri remembers feeling resentment when she was referred to Acorns Children’s Hospice.
“I didn’t want to come and I didn’t want to speak to anybody,” Keri said. “I certainly didn’t want to come and look around, and no matter how many people times people said it’s not like a hospital, I didn’t believe them.
“The car journey there was awkward, and we just braced ourselves. But it was like when you walk off an airplane you get hit by that wave of heat – and we walked into the hospice and just got hit with this wave of warmth and friendliness.”
Keri added: “During the visit I got lost trying to find the bathroom, and I saw one of the nurses in a room with a child, and the nurse was chatting to them about the weather, and singing songs, and she didn’t even know I was there.”
Acorns provides rehabilitative respite to Patrick and his family, and a tailored medical plan to meet all of his needs. He particularly enjoys therapy in the sensory room, and hydrotherapy in the hospice pool.
It was later diagnosed that Patrick had suffered Hypoxic Ischemic Encephalopathy (HIE), a brain injury caused before, during or after birth when oxygen or blood flow to the brain is reduced or stopped.
Mum Keri said: “The minute you come home with a poorly child, everything changes. Even the simple task of feeding my son is a medical process. When you come to Acorns, I know Patrick is in safe hands.
“You can become really isolated as a medical parent, but the minute you walk through the door at Acorns you’re hit with this wave of warmth and friendliness. As well as a wide range of therapies, the hospice takes care of Patrick’s medical needs.”
The hospice’s specialist nursing team also supports him with pain and symptom management through hydrotherapy sessions in the hospice pool and palliative play and sensory therapy.
Keri says her ‘beautiful boy, with the cutest eyelashes’ also gets all the cuddles.
Keri is now raising her hand and urging the Government to secure the Children’s Hospice Grant and long-term funding for children’s hospice care, for families just like hers and children like Patrick.
“What I do know for certain is that we’ll always need Acorns.” Keri added.
“The future of children’s hospice care is in the Government’s hands and it’s in the hands of the Prime Minister. It’s in the hands of everyone.”
Keri is joining a nationwide call urging the Prime Minister and the Government to secure long-term funding with the Children’s Hospice Grant. The future of children’s hospice care is in your hands.
If you want to join the fight and add your voice to our campaign, raise your hand today.
“Yusuf is a little cutie pie,” says mum Iram. She’s right. His big beaming smile greats everyone who meets him.
Yusuf is one of 6,000 children born in the UK every year with a syndrome without a name – a condition so rare it remains undiagnosed. But it means his life is limited.
Yusuf’s complex care needs were discovered during the first week of his life. Iram had taken her newborn son home and knew something wasn’t right. Her middle child Musah had passed away from an undiagnosed condition two years earlier. Yusuf’s dramatic weight loss was alarmingly similar.
Iram said: “You couldn’t tell when he was born. He was absolutely fine, a healthy baby. But when we brought him home, he’d lost 10% of his weight and I just knew something was wrong, I could feel it.
“We took him to hospital and the same consultant who looked after my other son was there and I’ll never forget the look on her face. They’d tested Yusuf’s blood. I looked at her and she nodded her head, she didn’t have to say anything. I knew Yusuf had the same condition as Musah.
“My whole world stopped. My other children had been born healthy and fine and I just didn’t think it would happen to me again. But Yusuf has amazed me. His condition is life limiting and will eventually lead to kidney failure but he’s active, he does well with his feeds, he sleeps through the night – he’s doing really well. I’m proud of him.”
The family’s journey with Acorns began in early 2020, as the coronavirus crisis swept the globe. Over the past 18 months they have visited their local hospice, Acorns in Birmingham, to enjoy time together, making precious memories and having fun in a safe and secure place.
They come to the hospice for important hydrotherapy, family splashes and music therapy and especially enjoy our Stay and Play sessions.
“There is no other place like Acorns for children like Yusuf. We go swimming together in the pool. We have messy play sessions with other children. And I have a whole fridge covered in artwork we have created together. I like to show it off to my family and friends.
“Yusuf loves it at Acorns and seeing him smile and do things he couldn’t at home just makes me so happy. It may sound small but doing things together and filling his day with fun means the world to me.
“Acorns gives us experiences and time together. Time to just be with each other where I don’t have to worry about his condition and he’s just my son for the day.”
When Karen and Johnathan found out they were expecting their second child, they dreamed of all the adventures they’d have and the precious memories they’d make together.
A keen planner, Karen had mapped out their lives, imagining their children as best friends, playing out in the garden, building snowmen in winter and opening presents together on Christmas Day.
She and husband Johnathan were so excited to start enjoying life as the ‘awesome foursome’ that when baby Thea was born on 24th August 2023, one of the first things Karen did was order her personalised Christmas stocking and plate for Santa.
“It was just pure excitement,” Karen said. “We kept saying we were the awesome foursome. Our family felt complete. We’d mapped out our whole life together.”
“I live and breathe Christmas and because we didn’t know if Thea was a boy or girl during the pregnancy, I’d saved all these little things I wanted to get that I couldn’t until she was born. So once Thea arrived, I ordered them all – her personalised stocking, a plate to put out for Santa and the book she’d read on Christmas Eve.”
But after just four days at home, the family’s world came crashing down.
Karen says she’d had a ‘nagging feeling’ something wasn’t right. Thea was lethargic, sleepy and wasn’t waking for feeds. She and Johnathan had reached out to their midwife team and were reassured on daily visits.
“The pregnancy had been great. We loved being parents and couldn’t wait for our son Rupert to become a big brother,” Karen said.
Thea’s birth was quick; she arrived nine days early but was ‘perfect’.
Her sleepiness and struggles to feed were thought to be the result of her fast delivery. But on day four, Karen and Johnathan were alarmed at how floppy Thea had suddenly become and their midwife agreed.
“We went to our local hospital straight away,” Johnathan explained, “thinking we’d be there for a couple of hours and just needed to get some nutrition into her to build up her strength and energy. But as more and more doctors, nurses and consultants became involved and no improvements were being made, that was the point we thought, ‘something really isn’t right’.”
“We were blue-lighted to the Children’s Hospital the next day and she was hooked up to every machine going. I knew it was something significant,” Karen added.
Thea was put on a ventilator while test after test was carried out over four long days. Nothing could have prepared Karen and Johnathan for the devastating diagnosis
“It was the worst news we could ever receive in our lives. We’d never heard of Nonketotic Hyperglycinemia (NKH). It’s a rare metabolic disorder that meant Thea couldn’t break down glycine which was causing her to have catastrophic seizures. Unbeknownst to us we were both carriers of this genetic misprint and had found each other.
“It was the hardest decision to take her off the ventilator, but we had to do what was right for Thea. She was just one week old. We sat with her in our arms, just looking at her. She was beautiful. It was the first time we’d seen her without the tubes since we’d arrived at the Children’s Hospital.”
“She was a little miracle. Her fighting spirit came through because she wasn’t ready to leave. When we took her off the ventilator, we were expecting no more than a couple of hours with her, but Thea was still with us the next morning.”
It was at this point, Karen and Johnathan were given the options to spend whatever time they had left together at home, in hospital or at Acorns Children’s Hospice.
It was then the couple made a new plan – to bring their family back together at Acorns and fill tiny Thea’s life with all the love and memories they could. This additional time and precious moments are something they will ‘treasure forever’.
“Everybody was looking after us, they couldn’t do enough. Putting us at ease and making sure Thea was cared for. They fed us and did our washing – doing those normal chores meant we were able to spend every minute, every second with Thea and that’s what we wanted.”
Thea found the strength to stay with Karen, Johnathan and big brother Rupert for 15 more days at Acorns, where they were given the gift of time together as a ‘normal family’, making memories and keepsakes, enjoying visits from family and spending sunny evenings out in the hospice garden.
When it was time to say goodbye on 15th September, Karen and Johnathan chose one of their favourite spaces. Thea was just 23 days old.
“We knew it was close. We said we wanted to be outside, because the garden meant so much to us. So, we sat in the sunshine and just held her in our arms, which was really peaceful, and Thea passed.
“We held her as long as we wanted to, just cherishing her and her beauty. We could hear Rupert’s laughter; he was happy in another part of the garden being looked after by staff and family. We had taken ourselves away to the memorial garden where we’d sit with Thea every evening when Rupert was sleeping. It just felt right.
“It was really horrific, but we were also so prepared and relaxed, because we were at Acorns and had been so well supported through Thea’s journey. What we achieved in those 15 days at Acorns was something special. Thea just wasn’t ready to go when in hospital, instead she’d decided ‘I’m going to give you so much more’.
“The first time we made that turn into Acorns our hearts were completely broken knowing we were there on an end of life pathway. But now when we return to visit it’s like we’re seeing family.
“It’s actually a positive thing for us; in that the majority of Thea’s life was here. Yes, there are sad memories but all our happy memories of Thea are here. Ultimately, Acorns puts a big blanket around you and makes you feel at home.
“They spent the time with us creating memories, things we wouldn’t have thought of doing – handprints, footprints, fingerprints. Things we will treasure forever.”
It’s these memories, keepsakes and many other priceless mementoes, Karen says, she and Johnathan hold on to.
“I’ve got Thea’s thumbprint on a keyring that I rub and feel all the time,” Karen smiles. “That’s something I really, really cherish.
“Acorns knew all the things that we were sad about. We were trying to live every moment with Thea but also processing that this ‘plan’ we had for a future with her wasn’t going to be.
“I remember saying, ‘She’s not going have her first Christmas’, and the nurses offered to do Christmas day for us the next day – and they would have done it. They would have done anything to make sure we were living every moment to its fullest.”
Thea has become an important part of her family’s Christmas celebrations, with Karen, Johnathan and Rupert creating their own special traditions with Thea at their heart.
“All those personalised things I’d bought for Thea for Christmas – at first it was so hard when they came through the post and we opened them up after she had passed,” Karen shared.
“But last year, our first Christmas without Thea, we still put out her plate for Santa, we released a balloon in the garden with written messages of love, and on Christmas morning, we each had a sentimental gift from Thea in her stocking. Rupert gave them out to each of our close family members. It was really nice and it’ll become an essential part of our Christmas for years to come.
“Thea touched so many people’s lives in her short life, it would be wrong for us not to continue celebrating her for special occasions. She will always be with 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 donation you can make is vital in helping us to continue the work that we do.
‘Hannah knew she was terminally ill and that she was going to die. That is horrible for anyone of any age, especially a teenager.’ Mum Christine Debney tells the heart-breaking story of their beautiful daughter – and how it all started with a sprained ankle.
Hannah Debney was seriously ill but no-one was listening, doctors didn’t believe what she and her parents were saying. Hannah was instead diagnosed with a mental health disorder.
She had been a ‘normal teenager’. She loved baking, dancing and meeting up with friends. But then one day she sprained her ankle and that was the moment everything changed.
“Hannah loved life,” said mum Christine. “She was a happy, normal teenager, but she then kept spraining her ankle and doctors didn’t know what was wrong with it. She had to use a wheelchair to get out and about and was also starting to get lots of other aches and pains.
“And then she started vomiting.”
At first no-one knew what was happening or why. She was admitted to hospital several times, tests were carried out, and she was discharged. They thought she may have an eating disorder or a mental health condition.
For the next 15 months, Christine said they went ‘round and round in circles’. Hannah even had bladder failure.
“In all this time she was getting thinner and weaker, and she couldn’t keep food or drink down and had to be fed by tube,” Christine said.
When she turned 16 she was moved to an adult ward and it was one doctor who then thought outside the box and discovered she had Hypermobile Ehlers-Danlos Syndrome, a rare connective tissue disorder.
Christine said: “As a mother I felt anger, to feel like we had wasted so much time. To be disbelieved was the hardest thing really while she was suffering.
“After being in hospital a long time Hannah received specialist treatment. Once discharged we then tried to live life as best as we could. We went to Cadbury’s World and did lots of things we had missed out on for so long. Hannah managed to get to college and she wanted to be a nurse, and she even learned to drive in a specially adapted car.”
Sadly after several bouts of sepsis, becoming bedridden and a lengthy hospital stay, doctors recommended not to resuscitate if the worst should happen.
That’s when Hannah made a brave and final decision.
“As a parent it’s devastating knowing that your child is going to die,” Christine said.
“Hannah said she wanted to tell the doctors to stop. No-one should have to make decisions like that. It was Hannah who said she wanted to go to Acorns Children’s Hospice and to be transferred there.”
Hannah spent just 15 days at Acorns and was the ‘bravest person’ her mum has ever known.
“Acorns was amazing,” Christine said. “They allowed us as a family to be together during her final days. Hannah knew her fate and she was able to talk about it and she was very brave. She was totally remarkable, right up until the last moment.
“The nurses were there, not just for Hannah, but for us as a whole family. Although we knew what was going to happen, Acorns was such a happy place and allowed us to make so many wonderful memories together.”
Acorns put on a beach party for Hannah, organised Shetland ponies to come and see her, and even bought her a Slush Puppy machine for her room.
Then they asked Hannah if she wanted to make a hand cast. She made the shape of a heart – and that has helped to inspire the Hannah’s Hearts appeal at Acorns, to remember a remarkable teenager and to raise awareness of the vital work the charity does in caring for children with life limiting or life threatening conditions.
“You can just see how relaxed Hannah was, and how happy she was to be at Acorns,” Christine said. “It’s upsetting to know you’re going to go there and you’re going to die, but at the end of the day, to go to Acorns was what she wanted.”
Hannah was just 17-years-old when she died.
Before she died, Hannah made mum Christine, dad Andrew and sister Charlotte promise to live their lives to the full.
“We’re going to do that,” Christine added. “She wanted us to enjoy life as best as we possibly can, because that’s what she tried to do as well.
“But believe me, that’s going to be difficult because we all miss her so very much.”
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.
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.
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 eight-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.
“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.
“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.”
Mum Sam Barklam reveals how support from 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 with Acorns Sibling Worker Jess.
Sam said: “I didn’t believe that there were actually people out there that could help me. I genuinely don’t know what I’d have done without Acorns. I didn’t know how much longer I would have been able to live like that. They literally lifted me up from rock bottom.”
Sam’s first visit to Acorns in the Black Country was an experience she describes as ‘simply amazing’.
“It just took away all the pressures of the life and gave me a break,” she said. “It just doesn’t feel like a hospice, and it’s so comforting when you get there. All the staff who work there are amazing, and they’re always so friendly and kind.”
Now Acorns is an important part of the family.
“Acorns has helped me in all aspects; emotionally, physically and mentally. They got involved when I was at my absolute lowest and was physically and mentally exhausted. They just scooped me up and helped get me back on the straight and narrow. They are brilliant,” she added.
While the future for Alex is uncertain, Sam is determined to ‘make the most of every single day’; and with the help of Acorns, they’ll do just that.
It costs over £35,000 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.
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.
“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.”
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.
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.
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.
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.
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.”
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.
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.