Watch the video of the real-life ‘Peter Pan.
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Dylan Myers weighs 14 pounds and is 89 cm tall. Wearing clothes meant for nine to 12-month-old babies and sometimes communicating “baby-babble,” it would be natural to assume that he’s just your average 18-month-old toddler. But Dylan is actually nine years old.
He should already be in the fourth year of primary school but is unable to because of his condition. Since the age of five, Dylan has only grown 1.4 cm and doctors don’t know why.
Despite the life-threatening nature of Dylan’s condition, the fact that doctors don’t know what’s wrong means Dylan’s case is called a SWAN – for Syndrome Without A Name.
Danielle Myers, 41, Dylan’s mom, takes care of him full time.
Danielle said: “We began naming Dylan the real-life Peter Pan after he stayed overnight in a ward called the ‘Peter Pan’ ward at GOSH.
“He grows by only 1mm a year, and when people look into his buggy, they coo and ask how old, when I tell them, he’s nine, their faces just drop.
“Doctors still don’t know what his genetic condition is, and still don’t know how best to treat him – it’s believed he’s the only one in the world.
“He’s had over 50 operations and has 21 different conditions diagnosed – but we struggle to get the help we need for him because he’s classed as a SWAN.
“We know that his condition is life-limiting, but he seems to take everything in his stride, he copes so well.
“But he can’t tell me when he needs water and due to his complex needs which include autistic traits, he can’t even use a sippy cup or similar.
“He recently regressed on his fluid intake, relying on myself to administer a syringe of water to keep him hydrated to prevent further kidney problems.
“I was initially prescribed syringes to try and combat that but they were stopped due to NHS budget cuts.
“We are unable to give him any of his fluids without these and I’m outraged.
Danielle had to give up her recruitment consultant job to take care of Dylan full-time and to home-school him. Even then, Dylan can only communicate through “baby babble.”
Along with husband Richard, 44, a painter and decorator, Danielle spends most of her time making sure Dylan isn’t having an apnea attack that’s choking off his air supply. It’s something that can occur up to nine times a day.
Danielle, who also has a 13-year-old daughter named Scarlett, said: “He looked perfect when he was born; he was small but I expected that.
“We didn’t even have to take him to special care, which I’d been trying to prepare myself for, but he seemed completely fine.
“He had seemed perfectly healthy until the 20-week scan.
“The sonographer thought she was looking at Dylan upside down, and I remember her going to get a colleague.
“I was terrified and soon enough, they told me – his heart was on the right-hand side of his body as well as most of his other organs.
“But he had a strong heartbeat and even when we got a second opinion, they agreed but couldn’t see any other problems.
“Yet by the time we reached the 27-week scan, they noticed he was getting smaller.
“The doctors were able to tell me then that he had a genetic condition but they didn’t know what.
“Yet when I held him in my arms, he was perfect and for the first few days, nothing seemed wrong.
“The first thing we noticed was his reflux – which in hindsight I’d experienced throughout pregnancy.”
Interestingly enough, Dylan’s current condition mirrors several symptoms that Danielle suffered throughout her pregnancy with him namely, difficulty breathing, panic attacks, insomnia, and heartburn.
Dylan has difficulty sleeping and often stops breathing. He also suffers from the same reflux so much so that the average two-year-old is heavier than him.
As doctors struggle to find the cause of Dylan’s condition, they are working round-the-clock to determine how best to treat him.