LOVING parents have described their plight while raising a five-year-old son whose genetic condition is so rare, it remains undiagnosed.

Dylan Myers suffers daily seizures and often ceases to breathe.

Weighing under 10kg and measuring only 82cm, he is stuck in the body and mind of a nine-month-old baby – his condition is life-limiting.

His parents Danielle and Richard Myers, 38 and 48, of Ongar, have vowed to make each moment with Dylan as special as they can.

Mrs Myers, who cares for Dylan full-time, said: “We do not know how long we have our precious boy.

“Dylan is so medically complex doctors feel we may never get a diagnosis, although he has been diagnosed as life-limiting.

“A big worry for our family is that Dylan regularly stops breathing and suffers daily seizures.

“He was born at 36-and-a- half weeks, and initially he didn’t need any special care at all.

“He was this perfect, tiny, little thing — he didn’t cry, he didn’t murmur.

“Until he reached eight weeks, when he had his first seizure, then came ear infec - tions and throat infections, and horrendous apnea attacks, when he would stop breathing.”

With regular visits to Great Ormond Street Children’s Hospital, Mrs and Mr Myers, a carpenter, treat Dylan at home.

He requires a sterile environment due to his low immune system, and regular doses of morphine and chemotherapy.

Mrs Myers explained how as Dylan grows older, against doctors’ predictions, his condition is becoming harder to manage.

She said: “For example, Dylan is unable to crawl around on grass, so we would love to build some astro-turf for him to crawl on.

“I home educate him but I lack the funds to buy much of the specialist equipment needed to do this.

“Unfortunately Essex council do not have it in their budget to fund children whom are home educated on medical grounds.”

The couple have set up a webpage to help raise funds, of which they have already raised more than £5,000. It can be found by visiting treeofhope.

org.uk/dylans-story.

They have also arranged a charity day at Abridge Village Hall, Ongar Road, Abridge on September 11.

There will be stalls, live music, refreshments and children’s entertainment.