A little girl who is one of just 75 children in the UK diagnosed with an extremely rare neurological disease has been described as a fighter.
Six-year-old Olivia Black was born with CDKL5 a genetic disease. She is unable to speak, suffers daily epileptic seizures and is fed through a gastrostomy tube because she can’t swallow properly.
Mum Amanda Black who is a trustee for CDKL5 UK – a new charity supporting children living with the condition – has organised a sponsored walk and wheel-a-thon this weekend.
She says because there are so few CDKL5 cases, fundraising is mainly left to exhausted parents of sick children but she’s determined to do her bit to help fund research worldwide for treating the symptoms.
“Olivia is a remarkable girl – a real fighter because every push to get up is twice as hard for her than any other child. It’s a privilege to parent her.
“I’m doubtful they will be able to find a cure in Olivia’s lifetime but if we can get more children interacting and socialising with disabled children then they will be more understanding as adults. That I would really like to see.”
On Saturday at 1pm, a joint event between CDKL5 UK and Olivia’s school The Redway School in Netherfield will be held at Stantonbury Campus schools athletics track .
Contact firstname.lastname@example.org to register.