OVER £20,000 has been raised by the Fermanagh community to support two-year-old Catherine Cox who lives with a rare genetic condition which affects one in 60,000 children across the world.
Born in September 2022, the Enniskillen girl lives with CDKL5 deficiency disorder. The condition causes a range of neurodevelopmental challenges, with research ongoing into future treatments.
The Fermanagh community has rallied in support of a fundraising campaign to raise money to support Catherine’s extensive treatments, with £21,876 raised at the time of going to press.
“It’s been unbelievable,” Catherine’s father, Niall, told the ‘Herald.
“With anything like this, there is trepidation putting out there because we don’t like asking for help, but people are only too glad to help.
“People are coming forward offering ideas for fundraisers, offering to help out. It’s been brilliant. “
Catherine was diagnosed with CDKL5 in November 2023. Since then, she’s been attending almost weekly appointments, with medical professionals trying to support her as best as they can.
“It’s so rare. When we visit the hospital and speak to a lot of medical people, they wouldn’t be aware of the conditions themselves. They have to go and do their homework on it first,” said Niall.
All proceeds raised will go towards helping provide Catherine with the best life possible.
“As she has got older, we’re at the stage now where we’re going to have to adapt our house. We live in a three-bed semi-detached so we are moving her bedroom downstairs,” Niall explained.
“We’re at the stage where we’ve gone out and got our own private physio in Belfast. Joanne brings her up. We’re at the point where we needed a bit of fundraising to meet the costs.”
Niall hopes that by speaking out about Catherine’s condition it will raise more awareness.
“A lot of people that know us and know Catherine knew she had some type of medical needs but didn’t know the extent of it. Its good for them to know what’s going on,” said her father.
“There is a CDKL5 days in June. We hope to build up to that by doing different things.
“We live in Enniskillen and all of our neighbours have been so good to us, asking if we need anything.
“The community has really rallied around us.”
Donations can be made via the online GoFundMe page ‘Catherine’s Journey: Fighting for Every First’ or by following the links on the Facebook page.
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