THE MOTHER of a boy who will never grow up says a charity that supports them is “absolutely vital.”

Danielle Myers, 38, from Ongar, is a rep for Swan UK. They support families whose children are living with an undiagnosed illness.

Danielle’s son, Dylan, six, suffers from a condition which means he is living in the body of a nine-month-old baby.

Friday, April 28, is Undiagnosed Children’s Day, and Danielle promotes the charity each year.

The mum-of-two said: “Before finding out about Swan UK, having an undiagnosed child is very lonely and very isolated. Knowing there are other people out there in similar situations is comforting.

“None of these children are the same, they do not fit into a particular box. They have very complex health issues.

“Knowing you are not alone and speaking to people in the same language is amazing. They give us incredible support.”

Swan UK say more than 6,000 children are born in the UK every year with a syndrome that has not been named. The charity aim to find the families and bring them together to form a support group and fund research into the illnesses.

Danielle added: “It’s just knowing that you have a group of friends there. As a rep for Epping, I have met up with a lot of people and other reps and we all confide in eachother. It’s a wonderful network of support.”

National coordinator for Swan UK, Lauren Roberts, said: “Raising a child with undiagnosed genetic condition comes with unique conditions. Without a diagnosis, families do not know what the future holds for their child. We want families to know they are not alone.”

The charity is now in its fifth year and offers 24/7 support to the families.

Danielle organises an annual fundraising day for Dylan’s cause, and raised £20,000 last year.

She has organised another charity day at Abridge Village Hall on Sunday, July 23, from 12pm to 6pm.

To find out more about Swan UK, email