By Jess Grieveson-Smith
A nine-year old boy has been dubbed the real life Peter Pan by his parents as despite his age, he’s still the same size as a TODDLER.
Weighing just over 1st and standing at 89cm, tiny Dylan Myers has baffled doctors with his rare condition meaning he has only grown 1.4cm since the age of five, and has stayed roughly at the same measurements as an 18-months-old.
Wearing nine to 12 month baby clothes, Dylan – who should be in his fourth year of primary school – cannot communicate apart from the occasional ‘baby-babble.’
Dylan’s life threatening condition has been named a ‘SWAN’ – meaning he has a syndrome without a name – and his mum Danielle Myers, 41, is his full time carer.
Danielle said: “We began naming Dylan the real life Peter Pan after he stayed overnight on 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.
“They cost £6.99 for a pack of just two – I just can’t afford that.”
From giving up her job as a recruitment consultant, to home-schooling Dylan who still can only use ‘baby babble’, Danielle now spends her days, alongside husband Richard, 44, painter and decorator, checking that Dylan hasn’t turned blue, having an apnoea attack, which can happen up to nine times a day.
Danielle, who is also mum to Scarlett, 13, 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 till 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 heart beat 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.”
Danielle suffered symptoms throughout the pregnancy that mirror Dylan’s condition now, including panic attacks, being unable to breathe, heartburn and insomnia.
These symptoms continue to plague Dylan, as he often stops breathing and struggles to sleep – he even has the same re-flux, to the extent that he weighs less than the average two year old.
Yet doctors appear to be no closer to finding the cause, and working out how best to treat Dylan.