A mum has spoken about the moment her world was turned upside down, as her young son was diagnosed with an ultra rare, incurable condition. Sheryl Lawson was given the heartbreaking news that her five-year-old boy Jeffrey has Battens disease, last year.
Symptoms of the illness include blindness, loss of speech, and even child dementia. Sheryl, 35, first noticed issues with Jeffrey’s speech when he was two-years-old but she did not initially think that it was anything serious.
However, he started having seizures and issues with his movement and that’s when Sheryl and fiancee Andy Charlesworth decided to get some more tests. The diagnosis floored her.
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Sheryl, of Accrington, Lancashire, 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.
“Then at 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 Street 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 six to 12 years I just broke down.”
Resource planning coordinator Sheryl is now trying to raise money to treat her son before he completely loses his memory. So far, he has been to Lapland to meet Santa and Drayton Manor to see Thomas the Tank Engine, with a trip to Disneyland planned for the future.
She added: “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.”
Sheryl continued: “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 I absolutely loved.”
Sheryl is also hoping that donations can help fund medical treatment and the travel expenses of heading to Great Ormond Street Hospital, in London. There is a treatment to slow down the disease, but it involves brain surgery and fortnightly trips to London.
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. 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.”
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George Holan is chief editor at Plainsmen Post and has articles published in many notable publications in the last decade.