Two-year-old boy with condition dubbed 'childhood Alzheimer’s' thought to be youngest ever diagnosed in UK
Heartbroken mum Rebecca, 25, was told nobody with the condition lives past the age of 20
Your support helps us to tell the story
From reproductive rights to climate change to Big Tech, The Independent is on the ground when the story is developing. Whether it's investigating the financials of Elon Musk's pro-Trump PAC or producing our latest documentary, 'The A Word', which shines a light on the American women fighting for reproductive rights, we know how important it is to parse out the facts from the messaging.
At such a critical moment in US history, we need reporters on the ground. Your donation allows us to keep sending journalists to speak to both sides of the story.
The Independent is trusted by Americans across the entire political spectrum. And unlike many other quality news outlets, we choose not to lock Americans out of our reporting and analysis with paywalls. We believe quality journalism should be available to everyone, paid for by those who can afford it.
Your support makes all the difference.The parents of a two-year-old boy from Staffordshire have been told he has a rare form of Alzheimer’s disease affecting children.
Reggie Griffiths is thought to be the youngest person in the UK ever diagnosed with Sanfilippo syndrome - a terminal condition which is usually fatal in late childhood or early adulthood.
Rebecca Griffiths, 25, has revealed her son was diagnosed in January and was told nobody with the syndrome lives past the age of 20.
Reggie was transferred to Birmingham’s Children’s Hospital after a paediatrician at Royal Stoke Hospital first noticed the symptoms.
“I didn’t cope well at first but I’ve got two other children to be a mum for and I want to give Reggie the best life possible,” said Ms Griffiths of the diagnosis.
“He will just slowly deteriorate to the point where he will be wheelchair and bedridden and won’t be able to eat. You just deal with each problem step by step."
Ms Griffiths added: “I want to make the most of him while he’s with me and give him amazing memories while he can recall them. There’s no point me falling apart.”
Usually diagnosed in childhood, sufferers experienced deafness, hyperactivity and behavioural problems, developmental delay, and seizures during the later stages of the condition.
“This case is one of the youngest I’ve come across,” said Bob Stevens, group CEO of the MPS Society.
“It is definitely very rare, especially outside of families that don’t have a history of Sanfilippo syndrome.”
“Each case is different depending on the individual but life expectancy is usually the late teenager years.
“There are increasing developments in terms of gene therapy and genome editing which has led to better diagnoses and treatment,” Stevens added. “We offer help and support during every step of their journey.”
Ms Griffths and Reggie’s father Jake Huckfield, 27, said they hoped to fundraise to help provide more research into the condition.
”It would be of some comfort in the future if we can say we’d contributed towards a cure in any way we can,” said Ms Griffths.
“A lot of people try and raise money for treatment abroad and we were told there were clinical trials - but I don’t want to put him through that.
“None of the clinical trials have worked so far and you don't know he is going to react to them," she added.
“I don’t want him being used as a guinea pig, so we’re just focused on giving him the best life possible while we have him with us and accept what's to come.”
Additional reporting by agencies
Subscribe to Independent Premium to bookmark this article
Want to bookmark your favourite articles and stories to read or reference later? Start your Independent Premium subscription today.
Join our commenting forum
Join thought-provoking conversations, follow other Independent readers and see their replies
Comments