A FUNDRAISER page has been set up online to try to help a boy from Colwyn Bay with an extremely rare degenerative condition.

Alfie Lovelady, eight, has been diagnosed with Adrenoleukodystrophy (ALD), a rare hereditary condition that damages the membrane (myelin sheath) that insulates nerve cells in the brain.

Early signs of ALD are the same as attention deficit hyperactivity disorder (ADHD), which Alfie has been suspected as having since the age of four.

And after regressing physically and mentally, in September 21, a MRI scan and genetic testing confirmed that Alfie had advanced ALD and would be unsuitable for treatment.

Within three months, Alfie lost all of his physical skills and now relies on his wheelchair and family to help him get out.

The fundraiser page, set up on the charity site JustGiving, has raised roughly £2,600, surpassing its set target of £2,000.

Money raised will go towards buying Alfie special equipment that he needs, as well as assisting with paying for possible days out and holidays for him and his family of five.

A post on the JustGiving page, written by Alfie's aunt, Emma, read: “As this disease is genetic, Alfie’s two brothers, William (11) and Noah (four) have had to undergo genetic screening and brain MRI (scans).

“Both boys have been found to have the same biochemical markers as Alfie and will be scanned every six months to monitor changes in the brain.

“Noah already presents with ADHD behaviour and is being monitored by consultants very closely.


Fighting fundraiser for Colwyn Bay boy with degenerative condition

“(What is) bittersweet is that William and Noah will both be found bone marrow matches and will go straight for transplant if cerebral changes occur; this will not cure any existing damage, but would stop future damage occurring.

“All three boys also suffer with Addison’s disease meaning they are steroid-dependent for life. Addison’s can go hand in hand with ALD.

“As it stands, Alfie’s parents are trying to find a suitable home and disability car so that they can enjoy Alfie’s time as the loving family they are.

“Alfies condition is now life-limiting with a prognosis of two to four years after the onset of physical deterioration.

“We are trying to raise money to help get Alfie any equipment he needs that cannot be supplied by local authorities and to help with days out, and maybe a mini break away so that they can make the best memories as a family of five while they still can.”

You can donate to the cause yourself at: justgiving.com/crowdfunding/alfie-joe-13.