Ballyclare man Jonny Paton will be running a marathon every month this year to raise awareness of and funds for the Reverse Rett charity.
Jonny’s three-year-old daughter Abby has been diagnosed with the condition.
He explained: “From birth until one year, Abby reached her milestones like most other children but when she turned one year, we started to see little effects of regression.
“Abby could say a few words, walk, finger feed and interact back and forward but this started to slowly stop.
“The diagnosis came really out of the blue for us. Abby’s regression has continued and has now completely taken her speech and the use of her hands, she can no longer feed herself, play with a toy or even point at an object.
“She takes absent seizures multiple times a day which range from minutes to hours. She struggles to walk due to the seizures and also her balance and therefore wears a bump helmet at home to protect her head if she falls.
“Abby is still the same beautiful, happy little girl she always was and we will continue to try to raise awareness and money for Reverse Rett in the hope that one day there will be a cure available.
Reverse Rett is often caused by gene mutation. The gene makes a protein to make the brain function properly but sufferers do not have enough of this protein.
Jonny’s first run was a 10k at Gosford Forest Park, in County Armagh. Next month, he will tackle a 10k at Antrim Castle Gardens followed by a full marathon, at Shane’s Castle, Antrim, in March, half-marathon at Glenarm Castle in April and Belfast Marathon, in May, with the remainder to be confirmed,
Abby’s mum Kelly said: “He’s not a keen runner so this wasn’t easy and something he plans to build on over the year.”
Jonny’s Just Giving page can be found at www.justgiving.com/fundraising/rettprincessabby