Fun day at Abridge Village Hall for Dylan Myers from Ongar

Little Dylan Myers, from Ongar, only sleeps for around 12 hours a week, can’t walk, talk and is trapped in the body of a nine-month old baby.

But doctors can’t pinpoint what’s wrong with him and although repeated blood tests come back abnormal, there are no genetic defects to suggest what the problem might be.

Instead, it's simply called SWAN - a Syndrome Without a Name.

Although he needs round-the-clock care, his mum Danielle has taken it in her stride and has devoted her life to ensuring her son always has a smile on his face.

This week, the family held a fun day at Abridge Village Hall in his honour, raising £8k.

“It’s not always easy though,” she says. “He’s in constant pain. He doesn’t feel well, he’s groggy in the morning and doesn’t have any energy.”

Dylan needs a cocktail of drugs including painkillers as strong as morphine, but these aren’t always effective.

“It’s like when you have the flu and you’ve got no energy, but it’s so much worse than that. He’s a poorly kid but he keeps a smile on his face. He’s adorable and amazing, even though he goes through a lot.

“His energy is unreal.”

He lives with his mum, dad Richard, 42 and his big sister, Scarlett, 11.

Despite the trials and tribulations of having a heavily disabled brother, Scarlett never complains and is always keen to chip in and help.

Danielle added: “To us it’s normal, even though to other people it’s not. As siblings grow the age gap closes but this is different. She doesn’t play with him, she looks after him. She is amazing with him though and has the patient of a saint.”

But it’s not always easy. Dylan can have 20 seizures a day - last week, he collapsed to the floor mid seizure and was left with a bruised face and a blood clot in his cheek.

A typical day for Danielle involves waking up at around 6am as Scarlett gets ready for school. If Dylan has managed to sleep, which he often does not, she’ll keep him down until around 8am.

When they get home from the school run, it’s time to give Dylan his medication. He takes three to four doses of around 15 different drugs, including chemotherapy.

Then it’s education time - they do all sorts from learning how to roll a ball to singing songs.

Most days, this has to be cut short to take Dylan to a range of hospital and doctor appointments.

In September, he’ll be going to a special needs school for a morning a week.

Danielle added: “It’s difficult because he’s so vulnerable. A common illness can make him incredibly poorly, which is why we do everything we can to keep him safe.

“It’s like a swan sliding above water and I’m paddling like a mad duck underneath.

“Every day with him is special. He’s life limiting and nobody can tell us exactly how long - but that’s a bit better."

When Danielle was 20 weeks pregnant, she found out Dylan’s organs were reversed - but a later scan showed he wasn’t growing properly. When he was born he appeared normal, although slightly small at 2.5kg. His real problems began at eight weeks old when he had his first seizure - but doctors were left baffled.

“I looked at him every day and thought - he’s perfect, how can he have a genetic disorder? They didn’t think he’d make it, he was in this bubble.”

This Sunday, the family held an "amazing" fun day at Abridge Village Hall to raise money for little Dylan's care.

Thousands of people, including James Argent, attended and in total, it raised £8,000.

The family have huge praise for Haven House Children’s Hospice in Woodford Green, where Dylan goes each week.

Danielle added: “He loves it. The respite is less for me and more for him. He loves going on the trampoline and playing with their toys. I don’t feel safe leaving him in many places but here, I know he’s in the best hands.”

Speaking about the future, she added: “Seven years he’s been here and it’s been a whirlwind rollercoaster of emotions.

"This is the life we’ve been dealt, the hand we’ve been dealt. I’m not spiritual, but this has to have happened for a reason. He’s made us what we are.”