Dementia strikes children too
The family got George’s diagnosis in February 2017, following seizures beginning in October 2016 which gradually got worse, that George had Batten disease, a form of childhood dementia. The news came as a shock to Claire, who had never heard of the illness before George was diagnosed.
“Even some of the professionals haven’t ever heard of it, much less supported a child with it.”
Due to its rarity, misdiagnosis is common. George’s diagnosis only took a couple months, but some families can wait years for answers.
“I think a lot of families have spent months and months trying to pinpoint what exactly is wrong with their child and we were lucky enough to have ours within a few weeks of George initially presenting with seizures, so we’re really thankful for that.”
Like many families facing Batten disease, one of the more common forms of childhood dementia, the sense of community from the other families has been invaluable for Claire. Through Facebook groups and national conferences, she has been able to come together with other parents to connect and share experiences. Even though there are several different variants of the disease, with different symptoms and outcomes, all the families are connected by their love and concern for their children.
Claire considers herself lucky with the support she’s gotten professionally in Warwickshire, and personally through the Batten Disease Family Association (BDFA), but she can still struggle with the reality of the situation.
“I think from a Mum’s perspective it’s just unfathomable to accept that you’re going to lose your little boy. I’m still trying to find an answer to that challenge.”
“The result of that was a huge collection of memories that we have now from last year, to remember and enjoy when we have bad days.”
Looking forward, Claire wishes there was greater awareness and understanding of childhood dementia and Batten disease. Dealing with childhood dementia is challenging enough, without facing physicians who are often just as in the dark regarding the illness and its treatment.
“I think it’s really important to raise awareness as much as possible about rare diseases like childhood dementia. For change to happen right at the top of society, and have that policy feed through right down to local services, so that George can have all the help and support that he needs.”