‘We would change the world for Lewis, but wouldn’t change Lewis for the world,’ says mum of boy with rare syndrome

Five-year-old Lewis Connett from Halifax, who was born with the rare genetic condition Apert Syndrome, which means that many of his bones were fused including his skull, fingers and toes. He is now raising awareness of Jeans for Genes. Picture Jonathan Gawthorpe

Lewis Connett has had a tough start in life.

Born with a rare genetic condition the youngster has already had 16 major operations including ones to physically stretch his skull to allow space for his brain to grow.

Lewis suffers from Apert Syndrome, a rare genetic condition which affect only one in 65,000 people and affects a multitude of aspects of the body including premature fusing of the plates in the skull, fusion of the fingers and toes, cleft palate, visual and hearing impairment, speech and language delay and in some cases a learning disability.

Five-year-old Lewis Connett with his dad John, mum Donna and brother Hayden.
Picture Jonathan Gawthorpe — Five-year-old Lewis Connett with his dad John, mum Donna and brother Hayden. Picture Jonathan Gawthorpe

But Lewis doesn’t let his challenges stand in his way.

“Apert doesn’t define the child that Lewis is,” says his mum Donna from Halifax. “He joins in with everything we do as a family. He likes to play with his big borther Hayden all the time – he’s an outdoorsy person. He jumps on his trampoline and rides his scooter. He likes to watch Bradford City FC and like a lot of boys his age he likes to make things out of boxes.

“Lewis’s favourite thing is to be in water. He loves swimming lessons. He is very sociable and he has taught us that nothing is impossible. Society has changed and people are more understanding of people with disabilities, but it’s still hard as people do stare or point a finger. I wish they would just ask.

“We would change the world for Lewis, but we wouldn’t change Lewis for the world.”

Five-year-old Lewis Connett has had 16 operations after being disganosed with Apert Syndrome but he still loves football and being outdoors. .
Picture Jonathan Gawthorpe — Five-year-old Lewis Connett has had 16 operations after being disganosed with Apert Syndrome but he still loves football and being outdoors. . Picture Jonathan Gawthorpe

Donna’s pregnancy with Lewis was straightforward. The delivery was a natural water birth, but as soon as Lewis arrived, a midwife pressed the emergency button and in rushed a team of medical staff.

“We thought all was going swimmingly well,” Donna, 44, a travel agent, recalls. “But Lewis’s head shape was slightly different, and all his fingers and toes were fused.

“Lewis couldn’t feed, due to a high palate and a submucous cleft, so he needed a special bottle. We were very lucky as the on-duty paediatrician had worked at Great Ormond Street Children’s Hospital. She said she thought Lewis had Apert Syndrome and gave us a leaflet from the charity Headlines.”

Lewis’s Dad John, 45, an account manager for a tool company, adds: “It was a period of real uncertainty. We had expected a healthy baby and it was hard to get our heads around it.

“A few weeks later were called in to the cranio-facial unit and there were 12 medical specialists in the room. A doctor told us Lewis had the features of Apert syndrome. He said: ‘Welcome to the family, you’ll be with us for the next 16 years’. It is a life changing moment to be told your child has Apert syndrome.”

John wanted to be as well informed as he could be so contacted the charity Headlines which received funding from the Jeans for Genes charity.

“It was Headlines who convinced us to push for a referral to our nearest Supra Regional centre at Alder Hey Children’s Hospital, 60 miles away in Liverpool.”

Genetic tests confirmed the diagnosis when Lewis was six weeks old. Apert syndrome can be herditary but as in Lewis’s case it can also occur sporadically.

Lewis is now five years old and has had a total of 16 operations the most recent on his feet which means he is now in plaster and will need to use a wheelchair for the next two monoths. He will need more procedures in the future but his family take it one hospital appointment and one day at a time. His first, at five-months-old, was cranial expansion surgery to make space for his brain to grow.

“We had to turn the screws in his skull 1mm each day,” Donna explains. “His big brother Hayden, now 12, would play with Lewis whilst we did it. Lewis was so resilient. Three months later he had surgery to remove the screws. Then aged two he had a frontal orbital expansion surgery to bring forward his forehead. The swelling was severe after and Lewis couldn’t open his eyes for 24 hours.” Then followed seven operations on his hands - he now has a thumb and three fingers on each hand which give him the best functionality possible.

Lewis’s feet are also affected. All his toes, apart from his little toes, are fused together. He was 18 months to two years old before he started walking and he walks on the outside of his foot.

He was slow to speak and his development and learning in general is delayed by around 18 months. He is in a mainstream school where he has 1-2-1 support. “He struggles with writing, as his fingers don’t bend, and his concentration is poor, but he has lots of friends and the school have been brilliant,” says Donna. Lewis has some hearing loss. He wears glasses all day and a patch to correct a squint for four hours a day. His airways are narrower, which has in the past led to bronchiolitis and breathing difficulties.

Despite all this Lewis in most ways is a normal little boy who doesn’t lett his challenges stand in his way.

“He is a cheeky chap and smiles all the time,” says Donna.

The family attend Headlines’ Family Weekend every year and have learnt a great deal from both medical professionals and other families. They now support other families. “The events have really helped Hayden as well,” says Donna. “Not that we talk about Aperts all the time, but just to know there are others in a similar position helps.”

John says: “The hardest thing as a dad is who to talk to. You feel you have to be strong for the family. When Lewis was born I rang Headlines for support three times and put the phone down each time, before I rang back. I felt I was in the dark, I needed some guidance and support and Headlines was amazing.”

500,000 children in the UK are affected by a life-altering genetic disorder.

Jeans for Genes Day raises money for Genetic Disorders UK, the charity that aims to change the world for children with genetic disorders.

It first became a national appeal in 1992. Since then Jeans for Genes Day has raised more than £35 million.

Funds raised will go to the vital care and support they need.

Jeans for Genes Day takes all this week and invites everyone to wear their jeans to work or school and make a donation.

For more on the charity Headlines visit https://www.headlines.org.uk/