When Danielle McCurry’s three-and-half year old daughter was sick at Christmas the busy mum of four wasn’t overly concerned.
It was only when Casey Leigh didn’t fully recover and started having mobility problems in the New Year the Limavady woman started to worry. Soon, Casey Leigh couldn’t walk unaided; grabbing onto whatever she could to move and, still, she would fall. Danielle sought medical help but was assured her little girl “was okay”. When things didn’t improve, Danielle took Casey Leigh back to the doctor who referred her to a specialist. Within weeks the toddler was choosing to sit rather than walk as it was just too much of a struggle. Frustrated at waiting for the specialist appointment Danielle took her daughter to A&E when “finally someone took notice”, she says. After several tests, Casey Leigh had an MRI in Belfast. Danielle thought whatever was wrong would at least be treatable.
“How wrong I was,” she said. “Turned out that Casey Leigh has Krabbe disease (also known as globoid cell leukodystrophy), and she is the first person in 20 years in Northern Ireland to have it.”
The rare, genetic disorder of the nervous system means Casey Leigh can’t walk or sit unaided. Her hand co-ordination is deteriorating and she has problems swallowing. “It got to the point where she no longer wanted to eat,” said Danielle. “Casey Leigh is fed through a tube in her nose, which is working well. Now her eyesight is deteriorating.
“I’m devastated, because there is no cure,” said Danielle, cuddling her daughter. “Her life will be cut short, but I have to take it day by day. Casey is bubbly and lively and she has a wee bit of that cute cheekiness and makes jokes. Everyone loves her.”
Danielle, a single mum, lives in Derry, but hopes to return to Limavady close to family.
“I have to watch Casey 24-7,” said Danielle. “I have four children so I can’t lie down. They keep me busy and they keep me going.”
Showing just how much they care, Bovalley Community Association (BVA) organized a charity swimathon at Roe Valley Leisure Centre on June 5. Limavady Council waived the fees and RVLC staff volunteered their time and 41 people raised £1,102.12.
Casey Leigh’s grand-aunt Jackie McCurry is BVA chairperson.
“Danielle would never ask for help. When I mentioned how sick Casey Leigh was and I’d like to help, we decided to do something. It was the kids who came up with the swimathon.”
Among them, Jordan Crawford and Tyler McElwee. “I was very tired but it was good to do something to help other people,” said Jordan. “I did it to help Casey Leigh and I was glad to do it. It’s good to help people,” said Tyler.
Paying tribute to the Association, children, the Council and RVLC staff, Danielle said: “It was such a lovely thing for them to do, and I want to thank everyone very much.”
Catherine Loughery of Roe Valley and Bovalley community associations said: “The kids had such a sense of achievement for doing something so worthwhile to help.”