Life has become hell! This boy stopped growing and remained forever in the body of a baby.
At 9 years old, this child is the size of a one-year-old baby.
“How fast it grows,” parents usually think sadly, looking at photos of their child. Unfortunately, the parents of 9-year-old Dylan Myers from the suburbs of London cannot say this. Their boy, born with the rarest Peter Pan syndrome, will never grow up.
At his age, Dylan weighs only 12 kg. With a height of 89 cm, he wears the clothes of a 12-month-old baby. In a year, a boy grows by only 1 mm.
However, when Dylan’s parents learned from the doctors that their son would remain a one-year-old baby, they called it a miracle. Although to call their life wonderful will not turn their tongue …
For nine years now, Dylan has still been sitting in a high chair, driving in a car seat, sleeping in a crib, bathing in a baby bath and moving around in a baby carriage.
But the worst thing is that parents have to constantly resuscitate their son: he often has apnea attacks, when his breathing suddenly stops for half a minute.
“The first time it happened was when Dylan was 4 months old. I held him in my arms, and suddenly the child turned blue, his breathing stopped, says the mother of the child, Daniel Myers.
— I was hysterical, I thought he would never wake up again. It was the longest 30 seconds of my life…”
Dylan communicates in the same way as a one-year-old baby. He says “mom”, he calls his dad “uh”, Scarlett calls her older sister “gaga” or “nana”, and her grandmother “boom-boom”.
“I can always tell what he wants, what he needs or when something is wrong, just by his eyes, hand signal, sounds. Our communication is great. Dylan makes every day special for me,” says Mrs. Myers.
Dylan was born when his mother was 41 and his father Richard was 44. The parents found out that their son would have health problems at the 20th week of pregnancy. The screening revealed that his heart was not developing properly.
At the same time, Danielle was able to bring the baby to 36.5 weeks, after which she had a caesarean section. At first, it looked like an ordinary baby who did not need special care and treatment.
“He was so beautiful, tiny, small,” my mother recalls. “However, Dylan cried a lot and ate poorly. And when he was eight weeks old, he had his first seizure.
This was followed by ear infections and throat infections, as well as terrible apnea attacks when he stopped breathing.”
Now such attacks can happen up to 9 times a day. And no one knows why this is happening. “He is literally dying in our arms, so he needs resuscitation all the time,” says Daniel.
And then Dylan’s grandmother noticed that one of his legs was smaller than the other. In the end, the child was sent to the hospital. “When the doctors said that our child had serious health problems, it was like the end of the world,” Daniel says.
Doctors said that the child would not live up to a year, they gave him a maximum of 5 months. “But he is already 9 years old, and we are still together,” Daniel tries not to lose heart.
Dylan is our miracle. Although deep down we understand that he will not be with us forever.
Dylan has made some progress. He is able to crawl and take several steps, from the age of five he has grown by 1.4 cm. But due to an underdeveloped heart and a rare syndrome, the baby’s days are unlikely to be long.
To prolong the life of the baby, parents give him 22 different medications a day, including morphine for pain relief, steroids, chemotherapy injections and oxygen, which saves him during attacks.
For 9 years, the child has already undergone about 50 operations.
At the same time, as such, the diagnosis of «Peter Pan syndrome» does not yet exist. What happened to Dylan, experts have identified as a rare genetic disease that belongs to the group of «syndromes without a name.»
“Despite many studies, the doctors could not give him an accurate diagnosis. They found more than 20 different disorders in Dylan, but they never gave it a name, says Daniel.
— I drink him with water from a syringe after they discovered he had kidney stones.
He was diagnosed with Attention Deficit Disorder and is now being tested for autism… He never sleeps more than a few minutes at a time, so I have not known normal sleep for nine years.”
Faced with adversity, Mrs. Myers is now helping other parents whose children are suffering from «Untitled Syndrome». There are more than 6,000 of them annually.
Danielle created the Swan UK (syndromes without a name) group, where she raises money for the treatment of children.
“When they say they can’t diagnose your child, it’s like you’re in an isolated world. There is no path to follow, no one will tell you what to do, admits Daniel.
“Therefore, we want to find families who are facing the same problem so that we can get through it together.”
