By Kathy Brown.
(July 11, 2019) — Waylon Page is 7 years old and attends Burr Elementary School. He is a cub scout, runs track, has raced quarter midgets, has a flare for drama and loves musical theater, and currently plays in the Westbrook Junior Colonials Fife & Drum Corp. He also has qualitative platelet dysfunction, a bleeding disorder.
When Waylon was four years old, he had his tonsils and adenoids removed, as many children do these days. “What should have been a routine surgery,” his mother, Sarah explained, “was anything but.” Waylon suffered a major hemorrhage and was hospitalized, undergoing transfusions and more surgeries. “When he was in one of those surgeries, a doctor came to me and asked if anyone in the family had a bleeding disorder.” It took about a year to diagnose Waylon after a lot of bloodwork at Yale.
According to the Indiana Hemophilia & Thrombosis Center website, Qualitative Platelet Disorder symptoms are “easy bruising, nosebleeds, bleeding of the mouth or gums, heavy menstrual bleeding (periods), postpartum (after childbirth) bleeding, and bleeding following dental work, surgical or invasive procedures.” According to Waylon’s parents, he has had all of the male symptoms. Sarah said one doctor explained it as, “when he has a blood test, the numbers and counts of his blood and platelets are correct, [but] they don’t work properly. It’s like if you had 100 soldiers come to battle, but 90 of them are off playing Xbox; they are inactive.”
Sometimes his nosebleeds have to be cauterized by an ENT, followed up by blood or platelet transfusions. After some bleeds, he can take medication to help stem the bleeding, though the medication can damage his kidneys, so they have to monitor his fluid intake. He gets very tired, his joints ache at times, and he bruises very easily. One time he bumped his head, and ended up with a brain bleed.
He is limited for sports. Anything that requires a helmet is definitely out, his mother said. They just can’t risk it. Soccer and basketball are too dangerous as well. Ryder Page, Waylon’s older brother, who just completed eighth grade at Haddam Killingworth Middle School, raced Quarter Midgets for years. Waylon was excited to watch his brother race, and couldn’t wait to get behind the wheel as well. He started racing, winning races in the Junior Novice class and Junior Honda Class. Unfortunately, the family decided that it was another sport too risky to participate in. Waylon retired from racing, and Ryder retired from racing as well, in support of his brother. “There were a lot of tears from the whole family,” said Sarah. “Racing is a lifestyle, not a past time sport [for our family]. It’s all in or don’t do it at all, and we all knew it was the end of an era.”
In the Spring, the family held a blood drive at Burr Elementary School, and the Red Cross went into Waylon’s classroom to talk about the importance of donating. They also explained about platelets and blood cells. According to Sarah, the blood drive made him feel very special. “He walked around like a little ambassador. Even the workers took pictures with him.”
Even something as normal as losing his baby teeth could be potentially serious. They need to let them fall out naturally, so that there is no trauma to the gums. His first two teeth had to be removed by an oral surgeon because of the potential for excessive bleeding, when the adult teeth started growing in behind the baby teeth.
The Page family is active in NEHA (New England Hemophilia Association) and participated in Unite for Bleeding Disorders Walks, sponsored by the National Hemophilia Foundation, in June in Massachusetts for the past two years. When they went to the walk the first time, “Waylon was so happy to be surrounded by people just like him – people with ‘special blood,'” his mother said. They also went to Winter Camp in Maine, sponsored by NEHA, where they went ice fishing, snow shoeing, and dog sledding. According to Sarah, “It was a place where I could feel confident my son was in the eyes and hands of others who knew what to do in case ‘something were to happen.’ For me, it was a place I could just breathe and have fun and not worry every second.”
“[Waylon] is a very strong little boy and takes it all in stride,” says Sarah. “He is very helpful and active. It’s very hard to always be on edge watching him, but also trying to let him be a boy and not live in a bubble.” His father Christopher echoed that feeling, “He just really likes trying to be a normal boy. He knows he has his limitations but tries to do everything that he can.”
The disease is hereditary, and other members of the family are being tested.
This week, Waylon is attending running camp. “He is a little hero in a limited body,” said Sarah. “He is his best advocate and doesn’t let it get him down . . . even in the hardest of times.”
So if you see a local blood drive, donate blood. You never know who you might be helping. It could be an extraordinary kid like Waylon Page.