Lewis’ story: Big things ahead for this remarkable boy
Lewis is almost two years old and greets everyone he meets with a warm smile. He lives in Halifax with his family who have been making the regular journey to Alder Hey since he was diagnosed with Apert Syndrome.
Apert Syndrome is a genetic disorder that causes abnormal development of the skull and affects other areas of the body but surgery can help correct some of the problems that result. The NHS designated Alder Hey as one of only four hospitals in England and Wales who have the required infrastructure, expertise and experience to treat Apert Syndrome and other craniofacial conditions.
The family were put in touch with Alder Hey and they later received a call from Craniofacial Nurse Specialist Joan Grogan to arrange a visit.
Lewis’ mum Donna explains: “Our first trip involved meeting the whole disciplinary team but it wasn’t a daunting experience as plastic surgeon Mr Christian Duncan made us feel relaxed by saying ‘Welcome to the family, you’ll be with us for the next 18 years.’
“They took the time to explain all about the condition and the journey most kids follow. We were a little upset as a part of us hoped we were wrong but the team made sure we had all the time we needed to gather information about the future. Even when we’d finished the meeting Joan told us to go and have a coffee and come back in an hour. She knew we’d think of loads more to ask. Joan and Colette who is also a nurse specialist, have been liaising with hundreds of families for years. They reassured us to call and send photos at anytime. Nothing has ever been too much trouble.
“So far, Lewis has had four surgeries with his first at only five months old when the surgeon successfully changed the shape of his skull. Even though he was so young, we had every faith in the surgical team. Later this year Lewis will hopefully be having surgery on his hands in October with Mr McArthur. The procedure on his hands will be quite complex so we’ve been told it may take a long time. Also, when he’s a few years older, Lewis will also have a frame fitted to aid the reconstruction surgery to his face.
“You can’t put money on the staff and care at Alder Hey. From the surgeons, to the nurses and including the domestics, everyone has made us feel at home. Even though a lot of time spent in hospital has meant being away from my 8yr old son Hayden, when he has visited, staff have made suggestions of where to go to spend time as a family. We met a lot of staff who have come far and wide to be a part of Alder Hey and many people from Liverpool. Each of them have showed a passion about what they do and what Alder Hey provides to families like ours.
“To help provide the essentials in the new hospital for the young patients, our family and friends have been doing some fantastic fundraising so far. A tiring triathlon and athlete style bike rides have so far helped us raise over £8,000.
“We’re really proud of how our happy little boy is doing. He’s inquisitive, always has a smile and he’s doesn’t seem to have much difficulty doing what he wants. With the help of Alder Hey, we’ve got big things planned for our remarkable boy.
“We’re not afraid of what lies ahead. We wouldn’t change Lewis for the world but would happily change the world for Lewis.”