Dementia strikes children too
Joanne and Lee celebrated their son Lleyton’s 11th birthday on 17th December 2017. The Harry Potter themed party was loved by Lleyton and his friends, but the celebration meant even more to his parents, who had been told this is a milestone their son might never reach. Joanne tells Lleyton’s story below in her own words.
“I met Lleyton’s dad when we were at catering college. We had been together for seven months when we found out that I was pregnant with Lleyton. Although morning sickness was a challenge, the pregnancy itself was fine, and all of our prenatal scans seemed to go well.
“Lleyton was born Sunday 17th December at exactly 11.58pm. We were so excited to get back in the morning, and welcome Lleyton to his new home. Later that day, the midwife came round to check on us, and noticed a yellow complexion on Lleyton, consistent with jaundice. She sent us straight to the local children’s hospital, where light therapy and blood tests were administered. The therapy helped with the jaundice, but the blood tests still showed unhealthy bilirubin levels.
“Eventually the doctors found that Lleyton had an enlarged liver and spleen. We kept going back to the hospital for more tests and failed diagnoses, and nothing seemed to help. One of the doctors then suggested a skin biopsy, and we waited for twelve long weeks for the results to come in.
“When we went back to the hospital to talk through the biopsy, I remember we were taken to a room with doctors and a specialist nurse who sat us down and told us that Lleyton had Niemann Pick Type-C, a form of childhood dementia. They continued to tell us that our son, then just five months old, had a very rare genetic disease that meant there was a good chance he might never reach his third birthday.
“We went home with the determination to not let this disease control Lleyton’s life. We would treat him like a normal baby, because in our eyes he was. He would sit up, crawl, talk, walk, and was continually fascinated with learning about the world around him. He was an incredibly bright little boy, always learning new songs, numbers, letters, and even sign language. He amazed us with his desire and capacity to learn, and we treasured every moment.
“Lleyton was around three when we first started to see the signs of his disease. He started to lose his speech, to the point that, by the time he turned four, we had to use basic sign language and pictures to communicate with him. He could only say random words and noises, forgetting everything else that he had previously learnt.
“For a long time after that there was little change in Lleyton’s condition. He didn’t get any better, but he didn’t get worse, which is really all we could hope for. On 9th August 2014, he walked me down the aisle on our wedding day, and completely stole the show.
“Unfortunately Lleyton’s mobility has declined since then, and he can now only walk when holding our hands. But through all the difficulties he faces, and the pain in watching our child struggle with everyday tasks we never used to think twice about, all we focus on is the number of times we were told that Lleyton wouldn’t still be here today.
“There is so much that doctors are still figuring out about Niemann Pick and childhood dementia, due to its rarity, and awareness in the general population is even lower. That’s the reason we wanted to get involved with this campaign. To reach out to as many people as we can, and raise awareness about this life-threatening disease.”