“It’s a struggle in day-to-day life, because there’s not a lot of information about the condition, there isn’t a lot of research we can look at,” Kelham said.
“We both constantly worry every day because with FNLC there’s always a chance of cardiac arrest.
“We don’t want that to happen, so we take every day as it comes, and put a smile on Harrison’s face and we do the best we can as parents.
“But Harrison doesn’t stop doing what he does, and we keep going.”
Due to his condition, Kelham and Shannon, 31, have to take Harrison to Great Ormond Street Hospital in London for treatment. Something the family struggle with.
“His current car seat isn’t right for him, he gets agitated trying to get comfortable, and we have to keep stopping every 30 to 45 minutes,” Kelham added.
“Car journeys are a problem in general, and he works himself up and can be sick because of it.”