Boy, 13, who has undergone more than 20 surgeries due to rare condition 'won't be defined by his syndrome'

Boy, 13, who has undergone more than 20 surgeries due to rare condition 'won't be defined by his syndrome' Lewis Connett was diagnosed with rare Apert syndrome as a baby and has since undergone 23 surgeries - but the determined 13-year-old has now helped raise more than £80,000 for the hospital that cared for him A brave 13-year-old boy who has undergone 23 surgeries due to a rare genetic condition has helped raise more than £80,000 and 'won't be defined by his syndrome', according to his family. Lewis Connett, from Halifax, West Yorkshire, was diagnosed with Apert syndrome as a baby. The rare condition is 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. His mother Donna had never heard of the syndrome before, but soon learnt of its devastating impact. The condition affects the development of the skull, limbs and facial structure, with Donna, 51, saying: "We had never heard of Apert syndrome before. To see more of the stories you love from The Mirror and to find them easily in Google then make us your preferred source. Free and easy-to-do, just click on the link here to find more from The Mirror at the top of your feed. “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 since undergone 23 operations, but his family say he "is not defined by his syndrome". Donna said: “There are certain things that Lewis struggles with, but he always finds his own way of doing things. 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.” That determination has seen the cricket-mad teenager take on challenges that would be difficult for anyone - including climbing Snowdon just months after undergoing surgery on both feet. Donna said: “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.” Lewis also plays cricket and football and has recently taken up table tennis. His mum said: “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.” After the initial shock of Lewis’ diagnosis, his family decided to turn their experience into something positive by raising money for Alder Hey Children’s Hospital, which has cared for him since he was a baby. Donna said: “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.” Over the past 13 years, the family’s Team Lewis Challenges JustGiving page has raised more than £81,000 for the hospital - and they now have their sights set on reaching £100,000. Lewis has thrown himself into the fundraising, taking part in charity nights, cake sales and cricket matches as well as climbing Snowdon. During one summer challenge, participants were tasked with walking 43 miles over the six-week school break, with Lewis clocking up his miles by walking around different cricket grounds. Family and friends have gotten involved in his fundraising efforts too, jumping out of planes and even completing a triathlon in Portugal to raise money for Team Lewis. Donna said: “Whatever challenges we take on, we always have fun.” The money raised goes towards Alder Hey’s fundraising pot, with Lewis’ parents saying some has helped fund craniofacial research and Christmas decorations at the hospital. Funds have also helped provide an iPad used as a distraction technique for children undergoing treatment in the burns unit. Lewis’ efforts have now earned him recognition at this year’s British Citizen Youth Awards, in partnership with Specsavers - something the teenager still struggles to believe. He said: “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.” Despite spending much of his childhood undergoing operations and attending appointments, Alder Hey has become a familiar place for Lewis and his family. Donna said: “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. “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.” Lewis is now awaiting a date for his next operation, a cleft palate repair. But despite having already watched her son go through 23 surgeries, Donna said the prospect of another never becomes easier. She said: “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.” Donna hopes her son’s determination will offer reassurance to other families whose children face similar challenges. She advices families to seek support and take one day at a time. She said: “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. "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.”