Baby Dylan had some sort of medical condition, as reported by The Global and Mail. His family was sure of it. He slept all the time and when he was awake, he was usually grumpy. Dylan’s parents, like most, assumed the worst but hoped for the best. If he just had sleep apnea, his symptoms would be minimized by having a tonsillectomy. But post-surgery, Dylan slept and acted the same.
It wasn’t until Dylan’s mom found a video online of a young girl who resembled her son, that she knew what was wrong. Her son perfectly emulated that little girl. He must have narcolepsy.
At age three, Dylan was diagnosed with narcolepsy and cataplexy. He was the youngest person in Canada to receive that diagnosis.
With the news of his illness came relief, but also fear. At least they knew what was wrong, but now they had to deal with it. The reality began to sink in that this would be with Dylan forever.
While medication helps control his symptoms, it by no means is a cure. His parents have to get up multiple times throughout the night to change his sheets when he uses the bathroom without control, to give him a second dose of medicine, and to feed him the specific foods he can manage to eat. Chewing is extra tiring for Dylan and sometimes the act of eating in itself causes him to fall asleep. With the bathroom complications come excessive thirst that is a side effect of his treatment. He has to sleep with his parents because he can be so deeply asleep that he throws up during the night.
Cataplexy attacks, or the sudden loss of muscle control makes things like family vacations extremely difficult.
Daily life is full of challenges.
The family hopes that Dylan’s life will improve as he gets older. He’ll slowly be able to manage more of his narcolepsy and cataplexy symptoms on his own. Until then, the family will keep pushing onward, spreading the word about these two diseases, writing articles on their blog, and supporting their son in every way possible.
You can read more about Dylan’s narcolepsy and cataplexy journey on The Globe And Mail by clicking here. You can read his mother’s blog, aiming to spread narcolepsy awareness, here.
