2023 – Jude
Two-year-old Jude is the youngest of four siblings and lives in York with mum Rebecca, Dad Nick and Evie, Lilly and Ollie. Jude was first diagnosed with Craniosynostosis at his local hospital and referred elsewhere, but the family requested to be seen at Alder Hey as one of five supra regional craniofacial centres in the United Kingdom with long-term experience of treating children with craniofacial conditions.
Craniosynostosis is a birth defect in which the bones in a baby’s skull join together too early which can cause the skull to grow in an unusual shape. The condition can affect how the child’s head shape grows and can cause potential pressure on the brain. Jude’s diagnosis was fusion of the metopic suture. This is referred to as Metopic synostosis with Trigoncoephaly.
Mum Rebecca said “Craniosynostosis is often missed or diagnosed as something else and there’s not enough awareness within the medical field, but we hope this will change. Early diagnoses are the key, we were one of the lucky ones. He is doing amazing, and we can never thank the teams at Alder Hey enough.”
Jude will continue to be followed up by the craniofacial team throughout his childhood.
2022 – Charlie
Charlie was born in Liverpool Women’s Hospital, but after being discharged and at just six days old, Charlie’s mum Laura noticed he had gone blue in the face before going out for his first pram walk.
Laura called 999 and Charlie was taken to Warrington Hospital and put onto a life support to help him breathe. He was eventually blue lighted to Alder Hey’s Intensive Care Unit.
Charlie was suffering with apnoeic episodes, which meant he would hold his breath for too long, causing him to not get enough oxygen. Charlie was put on a ventilator that would breathe for him and after 10 days, he was breathing all on his own, with no more apnoea episodes.
Doctors also discovered that Charlie had also inherited a protein C deficiency, which is a blood clotting disorder. This affected his right kidney and resulted in eventual kidney failure. Charlie now lives with just his left kidney working.
Mum Laura said: “All of the staff in ICU, HDU and 3B were amazing in our time staying at the hospital. There was never anything that was too much for them to help with and we will be forever grateful. We couldn’t cuddle Charlie for his first week in intensive care but my goodness, we’ve not put him down since!”
The family were delighted to come back and be part of the Matalan Campaign this year.
2021 – Micah
Micah was born with a congenital condition called Hirschsprung’s disease. This is a rare bowel condition that affects roughly 1 in 5,000 children. At just over 48 hours old he was taken to theatre to have a blockage removed and an ileostomy formed to enable his bowel to empty. An ileostomy is where the small bowel is diverted through an opening in the stomach.
Micah and his family spent a further two weeks in the neonatal unit with a team of nurses caring for him, as well as teaching the family all things ileostomy care and what to look out for with Micah’s condition.
Over the past year, Micah has been in and out of Alder Hey for numerous procedures and stays due to his condition. At 8 weeks old, Micah had the part of his bowel without nerves removed and joined back together, and recently he’s had his ileostomy reversed!
According to mum Kayleigh, Micah is now doing really well and loves to dance. He has also had his stoma reversed. Kayleigh said: “Alder Hey has become such a big part of our lives and we can’t thank each member of staff enough for all they do for Micah and all the children and families that they care for. We are so blessed to have such a wonderful hospital on our doorstep!”
2020 – William
At just 8 days old William had a cardiac arrest after contracting enterovirus which caused inflammation of the heart muscle. William spent three months on intensive care at Alder Hey, was ventilated and spent two weeks on ECMO – a life support system that does the job of the heart and the lungs whilst the child recovers. After two more procedures on his heart William improved and was able to go home. He is little brother to Isabelle and is a big brother to Oliver and Benjamin. William was also diagnosed with autism spectrum disorder, ADHD, nystagmus and autonomic disfunction. This doesn’t stop him living life to the full. He has a happy and mischievous character, which makes him loved by so many!
Mum Rachel said “We were told to prepare for the worst, but we never gave up, we fought by our boy’s side every step of the way. The Matalan campaign means so much to us as a family.” William loves cars and Rainbow Friends, and did his first reading in church in June, making mum and dad very proud!
2019 – Poppy
At just one year old, Poppy was diagnosed with a rare anomaly which meant she often choked any time her parents tried to feed her. Fast forward three years and she was able to eat her first Christmas dinner, thanks to Alder Hey.
She was diagnosed with congenital oesophageal stricture, which prevented Poppy from being able to eat lumpy or solid foods. She would choke any time her parents tried to feed her with anything other than pureed food.
Poppy required major oesophageal resection surgery which took place in 2017. This was followed by numerous monthly operations to stretch open the oesophagus following the resection surgery, eventually allowing her to eat solid foods from the age of 3 years old.
Mum Helen said “The older Poppy got the more she wanted to eat more and more and the more she would get distressed at seeing other children eat especially at parties when she couldn’t eat any cake. She had to be fed pureed food at nursery where all her other toddler friends were able to sit chomping sandwiches, and pizza.”
Poppy has a huge personality, is very caring and funny. She loves gymnastics, recently went to see Barbie and she is looking forward to starting Year 8.
2018 – Daniel
For the first few years of Daniel Bell’s life, he was like any other toddler, full of energy, happy and full of life at home in Ormskirk, but doctors soon discovered Daniel had a brain tumour the size of a fist.
At aged three, mum Rosalind and dad Colin, had noticed a change in Daniel’s behaviour. He wasn’t the same happy go lucky toddler he used to be.
Daniel was taken to Ormskirk A&E where he was quickly diagnosed with a brain tumour. “It was like the bottom had fallen out of my world, our lives changed in a split second. We were told he needed to go to Alder Hey right away and we were blue-lighted to Liverpool,” says Rosalind.
Once at Alder Hey, Daniel was taken straight to theatre for a 3-hour life-saving operation followed the next day by a further 9 hour operation.
Daniel is now a healthy and very active young boy who loves gaming.
Rosalind said “Alder Hey is such an inspirational place full of amazing people. The staff put the children first often at the expense of their own time. It is impossible to put into words how world class they are at what they do. We are fortunate to have them on our doorsteps.”
2017 – Isabelle and Alayna
Isabelle was diagnosed with Cystic Fibrosis at just three weeks old from her newborn screening test. Her younger sister Alayna was also diagnosed with CF shortly after she was born.
Cystic Fibrosis (CF) is caused by a faulty gene that a child inherits from both parents. The condition causes the lungs and digestive system to become clogged with thick mucus, making it hard to breathe. Children with the condition are also susceptible to chronic infection of their airways.
There is currently no cure for CF. The condition is progressive, meaning that as the child gets older, their lungs become increasingly damaged and they may eventually require a lung transplant.
Living with CF means that Alyana and Isabelle’s parents have to be that extra bit more cautious, for example about where they play, so no mud or hay which are filled with bugs.
Isabelle is very creative, loves arts and crafts, horses and gaming. Her sister Alayna loves story books, especially Harry Potter. They both dote on their little sister Lottie who is CF free. The sisters were delighted to join Matalan again to celebrate the 10th anniversary.
2016 – Lily
When Lily was just three, her knees and ankles began to swell. It hurt her so much, she could hardly move her legs at all and though two operations helped for a while Lily was soon back in terrible pain.
Lily started to trial a new medicine developed especially for children with severe arthritis, and the difference it made was amazing. It was a big decision to put Lily on these new medicines, but mum Jane and dad Nick trusted the doctors at Alder Hey completely. “We immediately felt we’d turned a corner. Today, she’s so, so much better – smiling, laughing and, incredibly, loving gymnastics!”
“We’ve seen so many remarkable people and remarkable things happening in our many visits to Alder Hey. Every year about 330,000 children from all around the UK are treated by the hospital, and thanks to the research they’re carrying out into new treatments and new medications many of their lives are transformed, like our Lily.” Lily is looking forward to talking her GCSEs next year.
2015 – Lewis
Lewis was born with Apert Syndrome, a rare genetic condition that affects 1 in 65,000 newborns. It can cause premature closure of the bones in the skull as well as fusion of the fingers and toes. He has had 18 major operations already.
His mum, Donna, describes the start of their family’s Alder Hey journey.
“Our first trip involved meeting the whole disciplinary team where we learnt that our journey was just beginning. It wasn’t a daunting experience as the surgeon made us feel relaxed and reassured by saying ‘Welcome to the family – you’ll be with us for the next 18 years’.”
Alder Hey is one of a handful of hospitals in England and Wales that has the infrastructure, expertise and experience to treat Apert Syndrome.
“Lewis underwent his first surgery at only five months old when the surgeon successfully changed the shape of his skull. Even though our boy was so young, we had every faith in the surgical team”.
Lewis is now at mainstream school and lives, eats and sleeps cricket, with enthusiastic support from Dad John and brother Hayden.
2014 – Erin
Just weeks after Erin celebrated her 2nd birthday she was diagnosed with acute lymphoblastic leukaemia (ALL), one of the most common childhood cancers. Immediately after her diagnosis, Erin had to have a life-saving blood platelet transfusion before being placed on steroids and a two year programme of chemotherapy.
In 2016 Erin had CAR T-Cell Therapy in Seattle and was then able to have a bone marrow transplant at the Royal Manchester Children’s Hospital. The transplant saved her life but left her with Graft versus Host Disease which affects her skin and joints. Erin has been a young ambassador for Alder Hey Children’s Charity since 2013 and raises money for other charities too. She is also into gaming on her Nintendo Switch, has just finished Year 7 at High School and recently saw the The Black Keys in concert.