Childhood dementia: Mum opens up about son living with the rare disease

Sadly, dementia is something that many Irish families have experience of.

Childhood dementia is a far more rare but equally devastating illness that affects a small number of children around the world. Now, one mum is on a mission to raise awareness of childhood dementia. Joanne Gresty's 11-year-old son Lleyton has lived with the condition since birth. In an op-ed on The Huffington Post, she explained that as a newborn Lleyton had a yellow tinge to his skin consistent with jaundice, as well as an enlarged liver and spleen. At a few months old he was diagnosed with Niemann Pick Type-C, a rare genetic disease also known as childhood dementia. "It meant there was a good chance he might never reach his third birthday," wrote Joanne. "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. "We treasured every moment." At the age of three, things started to change. Lleyton began to lose his speech and his mobility started to deteriorate, to the point that he can now only communicate using sign language and couldn't walk on his own. "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." Between 11 and 17 kids are diagnosed with the most common form of childhood dementia every year in the UK, though it's thought there could be more undiagnosed. Awareness of the disease is quite low, though it's not the first time we've heard of such an illness manifesting itself in children. Last year, parents Mark and Lisa Bushaway spoke about how their two daughters were diagnosed with childhood dementia at the ages of six and ten. "It’s such a cruel disease, one of the worst illnesses I have ever heard of. It’s robbed us of so much," Lisa told the Mirror.