A MOTHER whose six-year-old is stuck in the mind and body of a baby has welcomed a support group’s grant of more than £300,000.

Danielle Myers, who lives in Ongar, is a member of SWAN UK which has just been given cash by the Big Lottery Fund.

The 38-year-old’s son Dylan has SWAN – a genetic syndrome without a name – and means he weighs under 10kg and has only ever said five words.

She said: “Life was lonely and I felt so isolated in a world where everybody else’s babies were blooming and then I found SWAN UK.

“It is a wonderful community filled with people that are in a very similar situation as me.

“Although not one of us are exactly the same we know what it feels like to have a child who is poorly, undiagnosed and unlabelled.

“Having these virtual friends who sympathise, empathise and understand you is precious and this is what keeps a lot of people fighting for their child during a daily battle.”

The £312,634 grant was handed to Genetic Alliance UK to give to the SWAN UK group.

It provides practical and emotional support to bring families whose children have undiagnosed genetic conditions together.

Dylan’s illness means he can stop breathing up to ten times a day, has arthritis, seizures, a curved fine and his organs are reversed.

His family, including sister Scarlett, 10, and father, Richard, 41, were told Dylan was unlikely to survive past five months.

Mrs Myers, who is a full time carer, added: “You cannot take your eyes off him for even a second in fear that he will stop breathing.

“We cannot do the same things as other families as Dylan is at risk of infections and germs. In spite of all these things, he is the happiest, friendliest, sociable, loving child who everyone falls in love with.

“We don’t know how long we have him for but we cherish every single second with our miracle.

“At five months old we were told Dylan may not survive the general anaesthetic needed to put his Hickman Line in. But our little fighter did, and survived several other procedures too. He's one tough little cookie.”

The family are holding a charity fun day to raise money for a sensory room for Dylan at Abridge Village Hall in Ongar on September 11 from midday to 5pm.

For more information, visit https://www.facebook.com/events/1717345428522615/