Sheryl Lawson’s son, Jeffrey Charlesworth, was diagnosed with the ultra-rare and incurable Batten’s Disease and she now faces a race against time to give him treasured memories before child dementia snatches them away
Image: MERCURY PRESS)
A mum is desperately fundraising £75,000 to make memories with her beloved five-year-old son before he loses his memory.
Sheryl Lawson is in a race against time to give her son Jeffrey Charlesworth treasured memories before a rare disease takes away his ability to remember them.
Last year the 35-year-old was left heartbroken after Jeffrey was diagnosed with Battens disease.
The incredibly rare, life-limiting condition is incurable and will beset the youngster with symptoms including dementia, blindness, loss of speech and control of his movement.
But Cheryl and her fiancee Andy Charlesworth, 35, are now determined to make the most of the time they have left with her son.
Sheryl, from Accrington, Lancashire said: “We tried to make his fifth birthday the best that it could be.
“We ended up having a party at a local golf club, we had loads of his friends and school friends, just to get everyone to see him.
“One of our neighbors knew someone who has loads of vintage cars, so they brought them all over for him to play in, which was amazing.
“It was a really really good day and Jeffrey had a ball.
“We know we need to make the most of making memories while he’s able to enjoy them.”
On top of that, Sheryl has now organized for Jeffrey to go to Drayton Manor theme park, as he’s a huge Thomas the Tank Engine fan.
She also hopes to take him to Disneyland soon.
She said: “He is Thomas-mad, so we went there and he absolutely loved it, just over the moon.
“He loved all the rollercoasters, it was all just pure excitement. Last Christmas we went to Lapland to see Santa, which he absolutely loved.”
The urgency is needed because one of the symptoms of Battens disease is child dementia.
Sheryl said: “We didn’t know children could get dementia, it’s not something you associate with children.
“He’ll also end up with that, but at the moment his memory is more or less holding on.
“He still knows who I am, and who my sister is, and my mum, he gets so excited when he sees them walk in.
“He’s deteriorated in terms of knowing colors and things, but we’re hoping he’ll be able to regain them after treatment.
“He hasn’t said mummy in quite a while, but I heard him say it the other day, clear as day.”
There is a treatment to slow down the disease, but it involved brain surgery and fortnightly trips to London from their home in Accrington, Lancashire.
The family are asking strangers to donate towards medical expenses and travel costs too.
She said: “He was eligible for this treatment so he had a brain operation to put a port into his head.
“Now we go down to Great Ormond Street every fortnight for him to have a brain infusion, and hopefully after six to 12 months his symptoms will level out, but it won’t stop the blindness.
“At the moment, he’s lost his mobility he can’t walk on his own or stand unaided, and he wants to run but he can’t.”
Children with Battens disease don’t show any symptoms for their first few years.
Sheryl said: “He didn’t have any symptoms, until he was two when his speech started lagging a bit, but we didn’t think much of it.
“When he was three he had his first seizure, and then after that he had more and more until he was diagnosed with epilepsy.
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“Then at the start of 2021 his movement went a bit weird, but he’d just started new epilepsy medication, so we thought it was that.
“His mobility just got worse and worse, and they did a blood test to go to Great Ormond’s Street.”
Sheryl said the diagnosis felt like her world was turning upside down.
She said: “We got a call to go into hospital the next day to talk about the results.
“I asked if it was bad news, and they said yes, and I asked what it was, but they didn’t tell me because they didn’t want me to google it.
“I was just thinking the worse, and when we got there they told us he had Battens disease, that there was no cure.
“They sent us home with a leaflet, and when I read that the life expectancy is 6-12 years I just broke down.”
George Holan is chief editor at Plainsmen Post and has articles published in many notable publications in the last decade.