Clare's Wilmslow Half Marathon 2015 page
Clare Anumudu is raising money for Corpal - Supporting those with Agenesis of the Corpus Callosum and Aicardi Syndrome
Participants: Andrea Colbourne
Story
Corpal is a not-for-profit support group and charity run by parents, families and carers of children and adults who have ACC or Aicardi Syndrome.
"Luke is nearly 8 and has agenesis of the corpus callosum.
Agenesis of the Corpus Callosum (ACC) is a rare neurological condition in which the Corpus Callosum, the major “pathway“ for information which links the two hemispheres of the brain, fails to develop fully.
The effects of the condition are variable; ranging from normal development (where the condition may be undetected or be revealed incidentally), through mild developmental delay to severe learning difficulties, epilepsy, visual impairment and delayed motor development.
Luke has severe learning difficulties, behavioural and social difficulties, hypermobile joints and a mixture of high and low tone which is why he will never be able to walk.
He attends a special needs school and has huge mix of specialists who help him with his daily struggles. He wears splints on his legs 24 hours a day now and has an intensive physio regime. He needs help with everything from having a wash, changing his nappy, brushing his teeth to eating and drinking.
He's a very loving little boy with a big heart and an amazing sense of humour....but his problems have changed our lives in a massive way and his disabilities effect everything we do and the way we do it.
Thankfully in his early days we found Corpal and were able to speak to others in similar situations. To this day Corpal is a lifeline for our family.
Corpal is a charity that support parents and carers who have children with Acc. They are the first port of call after diagnosis.
It is devastating to discover that your child has a rare medical condition and Corpal recognises the need for emotional support.
Corpal can supply information on the condition and gives the chance for parents to contact other families and organisations
Corpal supports the newly diagnosed, arranges meetings for families, shares information and raises awareness of the condition.
Every bit raised is massively important to the charity and even a small amount can be what is needed to post out an info pack to a new family or to help run the website ...which may then be found by the newly diagnosed family".
Thanks for taking the time to visit my JustGiving page.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.