WHAT’S BEING CLAIMED:
- Reece Mitchell suffers from Batten disease — a cruel disorder affecting children which leads to dementia.
- Only 6 years old, the boy has already lost his mobility and speech.
- His devastated mother, Donna, said his condition has gotten worse and now fears that his son doesn’t know his family anymore.
A devastated mother whose six-year-old son was diagnosed with ‘childhood dementia’ thinks his son doesn’t recognize his family anymore.
Fun-loving Reece Mitchell has Batten disease, a rare genetically-inherited disease caused by the buildup of fatty substances in the cells which over time damages the brain and the nervous system. The youngster, who’s from a village near Inverness in Scotland, is now being fed through a tube and has already lost his ability to move and talk.
His 46-year-old mother, Donna, said Reece’s condition has gotten worse this year.
“Originally he knew what was going on and would fall over a lot. But he’d always pick himself up and carry on. Now it’s like looking after a baby with a six-year-old’s body.”
Although they’re not sure if Reece still recognizes them, the one thing that inspires Donna to keep going on is because he can still say, ‘Mama’.
“I am living every parent’s worst nightmare. With Batten disease, things can progress and change within weeks, months or years, we just don’t know how long we have left,” Ms. Mitchell told the Daily Record.
In 2017, Reece was diagnosed with autism and epilepsy which became more severe prompting doctors to conduct further brain scans and blood tests. The Record reports that he was eventually diagnosed with CLN2 in August 2018.
The type that Reece has — CLN2 — has no treatment. If untreated, life expectancy ranges from six and 13. Of all patients with Batten disease, only 30 to 50 children in the UK are estimated to have CLN2.
Before her son became ill, Donna had worked as a classroom assistant at Inverness College for about 20 years while her 16-year-old daughter had to delay her plans of attending university due to her brother’s condition.
Ms. Mitchell is now trying to raise £60,000 online to finance the special adaptions needed to house vital medical equipment for Reece despite local council bosses disapproving of the extension to their current home.
Meanwhile, the NHS struck an agreement for a CLN2 life-extending drug after two years of negotiating for a ‘fair price’.
Source: Daily Mail