On 17 December 2017 we celebrated our son Lleyton’s 11 birthday with a Harry Potter themed party.
This was a milestone we were told he might never reach when he was diagnosed with a form of childhood dementia at just five months old.
Never heard of childhood dementia? Neither had we.
Following a rather straightforward pregnancy – morning sickness aside – Lleyton was born at exactly 11.58pm on Sunday 17 December. As with any new parents, we were excited to take him home.
Later that day, the midwife came round to check on us before we left, 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 yet more failed diagnoses, nothing seemed to help. One of the doctors then suggested a skin biopsy. We waited for twelve long weeks for the results to come in.
When they finally did, we were ushered in to a room told that our beautiful, perfect little boy had Niemann Pick Type-C, a very rare genetic disease that meant there was a good chance he might never reach his third birthday.
Despite this, we went home with the determination to 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. We treasured every moment.
It was only when Lleyton was around three that we started to see signs of the 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 childhood dementia diseases due to its rarity. Awareness in the general population is even lower.
Approximately between 11-17 children are diagnosed with the most common form of childhood dementia each year but there could be many more undiagnosed children in the UK because there has been no funded research into the area.
Early diagnosis of childhood dementia is often missed due to the unspecific early symptoms which are often mistaken for other diseases. Delayed diagnosis is particularly harmful to the children as the brain damage caused is irreversible.
All parents want their children to enjoy life and to achieve their full potential. That is why we are supporting the ‘Dementia Strikes Children Too’ campaign which is trying to raise awareness among MPs and the wider public.
By doing so, we hope to change policy to improve diagnosis times and the care, support and services that will improve a sufferers quality of life.
Visit the campaign website to find out more and get involved with the campaign.