A little boy wakes up in the middle of the night, slowly, and in discomfort walks to his parents’ bedroom and limps to his mother’s side of the bed. He solemnly says “Mom, Mom…” waking her up. He indicates to her that his legs are really sore and he can’t sleep. Mom gets out of bed, takes him to the kitchen and gives him the medicine to help with the pain and heads back to bed.
To most of us, this sounds like growing pains that we all experienced when our little legs were growing into big legs. However, for a child with Noonan Syndrome, this is a much different pain, and far more uncomfortable than what we remember growing up.
Noonan Syndrome is a genetic disorder that affects each person in a different way. You would not necessarily notice a youngster with Noonan, as they are completely normal and function as anyone else. So what is Noonan Syndrome? 1 in 1,000 and 1 in 2,500 children worldwide are born with NS.
Yorke Parkin has Noonan Syndrome and since February is Noonan Syndrome awareness month, Yorke wanted to share his story about what it is like to live with it on a daily basis.
When Yorke was 2 months old, he had a heart murmur that caused the medical staff to take notice. Newborns that have a heart murmur is not something that should go unchecked. This of course was immediately looked into and this is the first check in a list of symptoms Yorke would soon have.
At two years of age, Yorke went through his first surgery due to undescended testicles. His second surgery would come three years later for the same reason to have them where they ought to be naturally. This meant trips to Vancouver Children’s Hospital. At 18 months, his gross motor skills were much delayed. Where most infants at that age can crawl or even walk, Yorke had a very difficult time holding himself while sitting. Since that time, Yorke has partaken in speech therapy as he struggles with speaking and communicating, although he has progressed exponentially.
There is an old saying that ‘boys will be boys’ in reference to horseplay, goofing around and coming home with bumps and bruises from adventures on the playground. In Yorke’s case, he can bruise rather easily compared to other children who can take a few bumps before a bruise shows up. A light tap can make a big difference in his skin tone change from soft pink to a deep purple very fast.
A rather curious syndrome of Noonan is his teeth have no enamel on them. Of course, the family take great measures to correct this, but the young man was born without it as where generally, we all are born with it.
It may not show because of his steadfast determination, but Yorke does have learning difficulties.
“I am in grade 4 but I read at a grade 1 level and I also have dyslexia.” Yorke told the Revelstoke Current.
Yorke is just shy of his tenth birthday; however his size is not quite on par with the average height and weight most 9/10 year olds rest at. He is a good 10 pounds lighter than his peers.
While this syndrome means that Yorke will learn, grow and develop at a slower rate than his friends and classmates, Yorke is more driven and determined than most so he is not left out.
When asked how he feels about having Noon Syndrome, Yorke paused for a minute and patiently waited for the wording.
“Different. Like, after a soccer game, I am really tired. I don’t see as many kids as exhausted as I am.”
Yorke participates in numerous extra-curricular activities. He is active in the Squash Club, Flying Arrows Productions, Ski Club, Just for Kicks Dance, Revelstoke Soccer and also Minor Ball. Now, one might wonder, why does this little guy push himself so hard when it wipes him out at the end of the day?
“Because I can and because I want too.”
Noonan Syndrome will always limit Yorke to some degree and leave him half a step behind, however he has a message to those that have told him to ‘hurry up’. Yorke also indicated that he would like more help in school as it takes him a bit longer to grasp a concept.
“It makes me sad but it makes me work harder. I am mini, I am good and I am fast. I would like for people to stop telling me to work harder.”
Young Master Yorke may have been diagnosed with Noonan Syndrome, it may cause him to be half a step behind, but his passion, heart and dedication will always make him a true leader and the Revelstoke Current has no doubt Yorke will be an asset to any team, group or program in his bright future.
I have Noonan Syndrome. What’s your super power?