Teen who has had over 20 surgeries on his skull, feet and hands due to rare condition still ‘lives life to the fullest’
Lewis Connett was born with a rare genetic condition called Apert syndrome.
A “determined and brave” 13-year-old boy with a rare craniofacial condition that has led him to have more than 20 surgeries on his skull, feet and hands has raised more than £80,000 for the children’s hospital in Liverpool that has supported him over the years.
Lewis Connett from Halifax, West Yorkshire, was diagnosed with Apert syndrome as a baby and was referred to Alder Hey Children’s Hospital for his first big operation, a posterior vault expansion that was done to create more space in his skull for his growing brain.
Apert syndrome is a rare genetic condition caused by a mutation in the Fibroblast Growth Factor Receptor 2 (FGFR2) gene, which affects how certain cells – including bone cells – grow, divide and die, according to Great Ormond Street Hospital’s website.
“We had never heard of Apert syndrome before,” Lewis’s mum, Donna, 51, told PA Real Life.
“It affects his hands and his feet and caused them to be webbed. It also affects his skull and a lot of his bones were fused together at birth, so that’s why all the surgeries have to take place.
“The first surgery (was) on his skull which was very worrying, but we were really well cared for, and Lewis bounced back straight away.”
Lewis has had 23 surgeries so far, and mum Donna said that he “is not defined by his syndrome”, always finding a way to overcome any challenges that he is faced with.
“There are certain things that Lewis struggles with, but he always finds his own way of doing things,” said Donna.
“For example, buttons can be a struggle. However, our lovely neighbour has adapted all of Lewis’ school shirts and has put poppers on the inside. On the outside it looks like it’s buttons, but on the inside it’s poppers, so Lewis can do it himself.
“Also, sometimes his feet hurt, but that doesn’t stop him. He just puts them in cold water if they hurt too much.
“Lewis is determined, funny and brave. We just see Lewis as Lewis, and he just happens to have Apert syndrome.”
Although the diagnosis was originally a shock, Donna said that the whole family have chosen to embrace this journey and turn it into something positive by fundraising for the hospital that has cared for Lewis for more than a decade.
“From the very start, myself and my husband and Lewis’ brother, Hayden, just decided to be positive about it, and to give something back. Being able to give back makes the journey a lot easier and a lot more positive,” said Donna.
Over the last 13 years, the Team Lewis Challenges JustGiving page has raised more than £81,000 for Alder Hey Children’s Hospital – and their next goal is to reach £100,000.
The money has gone into a general Alder Hey fundraising pot, but Lewis’ parents said that some of it has been used to conduct craniofacial research and to decorate the hospital at Christmas.
They added that some of the money has also gone towards an iPad as a distraction technique to help children in the burns unit while they receive medical attention.
Their extraordinary fundraising efforts have earned Lewis recognition at this year’s British Citizen Youth Awards, in partnership with Specsavers, with an accolade that shocked the young teen.
“It feels really good and it’s a privilege to see the amount of money we have raised, and I still can’t believe I’ve done all that,” Lewis said.
Over the years, Lewis has got involved with charity nights, cake sales, cricket matches and even climbed Snowdon in Wales, all to raise money for Alder Hey Children’s Hospital.
The teen also took part in a summer challenge, where participants had to walk 43 miles in the six-week, school, summer break – and he choose get his steps in by walking around different cricket grounds.
Family and friends have also jumped out of planes and taken part in a triathlon in Portugal to raise money on behalf of Team Lewis.
“Whatever challenges we take on, we always have fun,” said Donna.
“Lewis did Snowdon with a big group of us last year which was amazing. He only had double foot surgery a few months prior, but he did it.
“We were so proud of him. For someone who can’t walk very far, and for somebody whose feet hurt, he did absolutely amazing.”
The family regularly return to Alder Hey for check-ups and surgeries, and Donna said the hospital has become like a second family.
“Someone once said to me, ‘it’s a land of remarkable people’, and it is. Everybody there is remarkable – from the cafe staff to the porters. Lewis has had the same porters taking him down for surgeries for the past 13 years,” said Donna.
“The kindness of them all shines through, everyone at the hospital is very reassuring.
“They help you feel like you are part of a large family, and I think that’s what you need when you’re in hospital.”
For Lewis, one of the highlights of visiting the hospital is seeing Barrington the magician.
“I like going to hospital because there are some many great people around, such as the magician who is really fun,” said Lewis.
His next surgery is a cleft palate repair, but the date is yet to be confirmed.
Donna said that surgery is never easy for parents, regardless of how many procedures their child has undergone.
“No surgery is easy – I say this to families all the time. If your child’s poorly, or has got to go and have an operation done, it doesn’t ever feel any easier, whether it’s one surgery or 23,” said Donna.
The proud mum said that cricket-crazy Lewis continues to lead a full and active life.
“Lewis plays cricket, football and has just started playing table tennis and is not defined by the syndrome that he’s got. We just all live life to the fullest,” said Donna.
Her advice to other parents facing similar challenges is to seek support and take things one day at a time.
“Make sure that you speak to people and remember that no question is a silly question. Also, just try to take every day as it comes,” said Donna.
“I hope Lewis’ story will help encourage other people to stay positive. If Lewis can do it. Anyone can do it.
“We are just a normal family from Halifax, and we’ve been very lucky with the people that support, help and encourage us.”