At 9 years old, this child is as tall as a one-year-old toddler.
“How fast it grows,” – sadly parents usually think, looking at photographs 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 rare Peter Pan syndrome, will never grow up.
In his age, Dylan weighs only 12 kg. With a height of 89 cm, he wears the clothes of a 12 month old baby. For a year, the boy grows 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 calling their life wonderful will not turn one’s tongue …
For nine years now, Dylan has been sitting in a highchair, riding in a baby 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 attacks of apnea, when suddenly breathing stops for half a minute.
“The first time it happened was when Dylan was 4 months old. I was holding him in my arms, and suddenly the child turned blue all over, breathing stopped, – says the child’s mother Daniel Myers. – I was hysterical, I thought he would never wake up. It was the longest 30 seconds in my life … “
Dylan communicates in the same way as a one-year-old baby. Says “mom”, dad calls “uh”, Scarlet’s older sister calls “gaga” or “nana”, and 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 wonderful. Dylan makes my every day special, ”says Mrs. Myers.
Dylan was born when his mother was 41 years old, and his father Richard was 44. The parents learned that their son would have health problems in the 20th week of pregnancy. The screening showed that his heart was not developing properly.
At the same time, Daniel was able to bring the baby to 36,5 weeks, after which she underwent a cesarean section. At first, it looked like an ordinary baby who did not require special care and treatment.
“He was so lovely, tiny, small,” Mom recalls. “However, Dylan cried a lot and ate poorly. And when he was eight weeks old, he had his first attack. This was followed by ear infections and throat infections, as well as terrible bouts of apnea when he stopped breathing. “
These attacks can now happen up to 9 times a day. And nobody knows why this is happening.
“He literally dies in our hands, so he constantly needs resuscitation,” 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,” says Daniel.
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 baby’s life, parents give him 22 different medications a day, including morphine for pain relief, steroids, chemotherapy injections, and oxygen to save him during seizures. For 9 years, the child has already undergone about 50 operations.
At the same time, as such, the diagnosis “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 “untitled syndromes.”
“Despite a lot of research, doctors have not been able to diagnose him accurately. We found more than 20 different disorders in Dylan, but never gave it a name, says Daniel. – I sing it with water from a syringe after they found he had kidney stones. He was diagnosed with attention deficit disorder and is now being tested for autism … He never sleeps for more than a few minutes at a time, so I have not known normal sleep for nine years now.
Faced with adversity, Mrs. Myers is now helping other parents whose children suffer from “Untitled Syndrome.” There are more than 6000 of them annually. Daniel has created a group Swan UK (syndromes without a name – “syndrome without a name”), where she collects money for the treatment of children.
“When they say that they cannot diagnose your child, it’s like you find yourself in an isolated world. There is no path to follow, no one will tell you what to do, – admits Daniel. “So we want to find families who are facing the same problem to get through it together.”