'My son has a rare condition only 15 people have'

Harrison has a rare condition which affects just 15 people in the world, his parents said

The parents of a five-year-old boy say they "constantly worry every day" because he has a rare condition, which means "there is always a chance of cardiac arrest".

Harrison's dad Kelham and stepmother Shannon say they were shocked when they were told their son had a condition only 15 people in the world had.

Harrison has a rare mutation in the Filamin C gene, also known as FLNC, which impacts his spine, heart and lungs.

The family, from Ilkeston in Derbyshire, are now fundraising for a specialist car seat to make his weekly 260-mile round trips to Great Ormond Street Hospital in London more comfortable.

Kelham, 30, says due to the rarity of the condition, there is not a lot of a research, and it is "difficult to know what the future holds" for his son.

He noticed something was not right when he stopped one afternoon with Harrison in the car.

Aged two at the time, Harrison began to vomit in his car seat. Arriving home five minutes later, Kelham said he noticed a curve in his back while he was changing him.

After taking him to A&E, medics diagnosed Harrison with scoliosis. But further examinations were later carried out, and after a number of trips to the Queen's Medical Centre in Nottingham, Harrison took part in genetic testing.

The family said the specialist car seat would improve Harrison's wellbeing

"There was nothing to suggest something was wrong when he was born and was just a normal little boy," added Kelham.

"The hospital tests came back as a gene mutation called FLNC (Filamin C); it's very rare, and 15 people in the world have what he has. We were really shocked when we were told."

The condition has led to Harrison developing a curved bend in his spine, so his shoulders and the bottom of his back are no longer in line.

In turn, this has meant Harrison is at higher risk of further complications.

Harrison has restrictive cardiomyopathy - a heart muscle disease where the heart muscle becomes stiff, preventing it from relaxing and filling with blood properly.

The scoliosis also puts pressure on the lungs and has decreased his respiratory function, causing lung disease.

The family said Harrison now faced an arduous surgery to remove vertebrae and have metal rods fused to his spine to straighten it, after wearing a halo device fixed to his skull and leg bones to slowly pull his spine into a straighter position.

Dad Kelham said the family were shocked when they were told about the condition

"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."

Harrison attends Great Ormond Street Hospital up to four times a month for specialist treatment

The family have partnered up with children's disability charity Newlife in raising money for a specialist car seat moulded in the curve of his spine.

This would enable Harrison to have comfortable journeys and give the family more confidence in having more trips out with the rest of the children.

Shannon said despite his condition, Harrison still lived life to the fullest.

"He will try his best in everything that he does, like what any other child does," she said.

"Harrison has his challenges, but he's a happy little boy, and we love him for who he is."