Ataxia is a progressive neurological condition that affects walking, speech, and coordination. It can strike any age, including babies, children, and teenagers. There are different types and causes of ataxia but many cases are inherited, meaning more than one child in a family can have ataxia.
Ataxia robs children of their childhood in so many ways. A child with ataxia becomes progressively disabled, and will ultimately be dependent on other members of their family for their most basic personal needs. Parents have to find a way to explain to their child that their condition will never get better and is likely to get worse with time. Other family members are affected too – brothers and sisters can feel neglected and left out, and when ataxia strikes a parent, children become carers.
With your help, Ataxia UK supports people with ataxia in many different ways. We fund world-class research into ataxia in the hope of finding effective treatments and ultimately a cure for ataxia, with a number of important developments seen already. To support people living with the condition, we provide free membership, a dedicated helpline and advocacy service, welfare grants for essential equipment, free information and a specialist website, a network of local support, and a chance to come to events and meet other people in the same situation.
“We face a huge challenge in trying to support everyone who has ataxia, from older people down to babies. The support we get from Childlife allows us to offer specialist services for children and young people with the condition, including their own events and activities, specialist equipment like wheelchairs, or even research projects into types of ataxia that mostly affect children. It’s so devastating for families when they hear that their child has ataxia. Thanks to Childlife we can make things a little easier.” Susan Millman, Chief Executive, Ataxia UK.