At first glance, Dylan Myers looks like a normal two-year-old. The reality is he is eight but stuck in the mind and body of a baby because of life-limiting genetic conditions falling under the catch-all term of Swan (Syndromes Without A Name).
Swan is not a diagnosis, rather a description of a condition to which testing cannot attribute a genetic cause. It affects around 6,000 babies born in the UK every year.
Dylan’s life is a series of hospital appointments and he receives a cocktail of drugs to manage the constant pain.
At just 82cm (2’ 8”) tall and weighing only 12kg (less than two stone) Dylan greets me at the door of the family home in Ongar, Essex, in baby clothes.
“The most upsetting thing for us is that Dylan’s condition means he stops breathing several times a day — he literally dies in our arms,” says his mum Danielle.
Dylan is non-verbal but has developed a system of sign language to communicate with his mum, dad Richard and 12-year-old sister Scarlett.
He makes a moaning sound to indicate his pain as Mrs Myers, 40, prepares a dose of one of the many medications he requires daily.
Today Dylan is especially unwell and after our interview his mum rushes him to Great Ormond Street Hospital, where he is under the supervision of 15 medical teams.
“It is not an unusual day for us,” she explains as she gives him his medication through an oral syringe.
“No one can make him better. They all just manage his care. He is literally serviced from his eyes to his toes.”
Dylan suffers from 20 conditions including growth delay, heart and breathing problems, high blood pressure and immune deficiency.
A dedicated Swan nurse at the hospital helps Mrs Myers co-ordinate the host of teams looking after Dylan.
“He is on so many medications — morphine to manage his pain, oxygen to help him when he stops breathing and the daily injections and infusions he has to give him quality of life.”
Instead of foodstuffs and tea cups, her kitchen cupboards are full of medication.
With such a low immune system, even a common cold could kill Dylan.
“The whole family are vaccinated every year. He can’t even play in the garden because of the germs,” Mrs Myers says.
Dylan, who enjoys watching Peppa Pig, constantly points to his wrists to indicate which injection he needs.
The family were first made aware of a problem when Mrs Myers was 20 weeks pregnant.
“We were going to the hospital to find out the sex of the baby. I was excited like any expectant mother. But then they told us his heart was the other way round.”
At the time they tried not to worry as doctors told them it was quite normal. But at 27 weeks Mrs Myers was warned Dylan was not growing properly.
“I was was heartbroken. The nurses sat me down with a cup of tea full of sugar to cope with the shock. They told me I might have to deliver him now and they couldn’t tell me why he wasn’t growing —just that he had a genetic condition.” She eventually gave birth at 37 weeks.
“He was perfect,” she recalls. “You count ten fingers and ten toes. He looked normal. That is all you wish for. Everything they told me about him didn’t make sense.”
But at his brit, the couple realised something was amiss.
“That evening he bled through two nappies and screamed non-stop. He wouldn’t feed. I didn’t know what was happening.”
At eight weeks old, he started having seizures. “We rushed him to A&E and they admitted him. He was there for a week of scans but they kept coming back with nothing.”
With no answers, the family had to manage the best they could.
“All the time he was deteriorating and we didn’t know it,” adds Mrs Myers, who has given up her career in marketing to care for Dylan.
When he was four months old, she took him to her father’s workplace, where the baby suffered a major seizure.
“We had to resuscitate him,” she explains with stoic frankness.
Dylan was four when he finally identified as a child with Swan.
“We have always not known exactly what is wrong with him,” Mrs Myers says. Swan just provides a name for it. But it provided us with a way of connecting with other parents and children going through similar things.
“The thing with Swan is you can be mild — or severe like Dylan. There are all sorts of things on the spectrum.
Through the charity Swan UK, Mrs Myers has found comfort in talking to parents in similar situations.
“It is not like we want pity,” she says. “Not one of us would swap our children but we understand each other.”
Dylan’s needs mean the family never go on holiday. And Mrs Myers and her husband, who works as a painter and decorator, have no time to spend together. They retain Hampstead Synagogue membership to keep a Jewish connection but are in no position to be involved.
“We literally live our life hour by hour. I have appointments back-to-back each day with doctors, nurses and specialists.
“We can’t do the things other couples do. We can’t go to barmitzvahs or weddings with our friends.”
Things have also been difficult for Scarlett. “She should have an annoying brother who runs around and takes her stuff or shoots her with a nerf gun. But she doesn’t. Scarlett has been amazing about it all. She doesn’t complain. She gets on with it and looks after Dylan. It means she has matured in ways other people her age haven’t.”
Mrs Myers is talking to the JC to raise awareness, not because “it will make anything better but because I want the world to know he is an amazing child. We love him and would not change him for the world.”
She set up a blog dylansstory.co.uk and is fundraising to turn their modest garden into a sensory room where Dylan can play safely.
“It is very expensive but it would be great for him to have somewhere safe to play.
“Because of his condition, his life is here at home with me. He doesn’t have a friend in the world. It would just be nice to give him something special.”
Two of North Yorkshire mum’s Lisa Beaton’s four children have genetic conditions which defy diagnosis.
Mrs Beaton says that after her youngest, Amelia, was born nine years ago, she and husband Martin realised there were problems both with Amelia and older brother George.
“My pregnancy with Amelia was was hard but I carried her full term and it felt normal,” she recalls.
“But then she struggled to feed or maintain a normal body temperature. She would cry and cry and never settle and she would sit funny. We noticed her neck was stiff and not normal.”
Meanwhile George, who is three years older, was experiencing gastrointestinal problems and was also being seen by doctors.
“At nine weeks old, Amelia was diagnosed with arthrogryposis [congenital joint contracture in two or more areas of the body] and we were told she may have a genetic condition. But they couldn’t say which one.”
At six months, Amelia started having respiratory problems. By the age of two, she was being fed by tube.
“Over the next few years, they both developed more complications and we were going back and forth to the hospital with no concrete diagnosis,” Mrs Beaton says.
“We felt completely alone. One of our eldest children [Jack] has autism and at least with that you know where you stand. Having an undiagnosed genetic problem is completely isolating.
“You don’t know what to do about it or what can help them.”
George and Amelia are cognitively developed. They attend mainstream schools but their physical difficulties mean they have to be accompanied full-time by carers.
Mrs Beaton — a parent representative for Swan UK — had to give up her job to look after them. Her husband is a pilot.
“They can’t be left unsupervised,” she stresses. “It affects every aspect of family life. I spend a lot of time on the train travelling to London for hospital appointments.
“Between them, they take 14 different medications a day and Amelia is under 11 specialists.”
It was also hard for siblings Harry and Jack. “A lot of my time goes into looking after Amelia and George. Because of the hospital appointments I can be away from the family home for some time.”
The Beatons — members of Harrogate Hebrew Congregation — find it difficult to respond to questions about the future of Amelia and George.
“People ask about life expectancy and we don’t know. We can’t say because we don’t know what they have. You learn to live every day as it comes.”
