Double your donation to help children with Down syndrome | Action Medical Research

Double your donation for free

Big Give 2017 Toby, Corey, Izzy Story

Discovering that three of their children have the devastating, rare condition juvenile Batten disease has, says mum Dee, left the family feeling numb. Twins Toby and Corey, 14, and Izzy, who’s nine, are all affected. Their sister Amber does not have the disease, but may be a carrier.

What is juvenile Batten disease?

Children affected by juvenile Batten disease experience a wide range of symptoms including sight loss, tremors, epilepsy, problems with balance and walking, behavioural and psychological issues and, as the disease progresses, difficulties with chewing and swallowing. Tragically, the disease is fatal.
 
Caring for three sick children means neither parent can work and every day is a challenge. But Dee says: “We get our strength from the children. No matter how hard it is, they have so many battles to fight, we’re going to do everything we can for them.”
 
You can read more here and by watching the video at the top of this page.
 

Our target

We are hoping to raise £40,000 to help fund Dr Emyr Lloyd Evans who is working to bring hope to families affected by juvenile Batten disease. But we need your help. 
 

How you can help

By donating through the Big Give Christmas Challenge you can help children in the future.
 
To support this life-changing research please Donate here
 
The Big Give Christmas Challenge runs from midday on 28 November 2017 and closes at midday on 5 December 2017.
 
Donations can be made using a credit / debit card and we would greatly appreciate your support, however much you can afford to give.
 
 
Help us spread the word