It害羞草研究所檚 been nearly five years since Noah Peppin has had one of the life-threatening seizures that plagued the first two years of his young life 害羞草研究所� but his mom knows one could still strike at any time.
So it was devastating to learn, says Stephanie Vazquez, that if one were to happen at school now, odds are slim her feisty, yet shy, son will get the life-saving medication he害羞草研究所檒l need in time.
害羞草研究所淲ith zero exception to the rule害羞草研究所� he is now at school for six hours a day with no rescue medication. If he has a seizure that lasts longer than three minutes he needs rescue medication,害羞草研究所� the South Surrey mother said.
害羞草研究所淲hat if the ambulance doesn害羞草研究所檛 arrive within three minutes? What if they don害羞草研究所檛 have what he needs?害羞草研究所�
Vazquez said her family was notified last month that Noah, who was has Sturge-Weber Syndrome (SWS), no longer meets the criteria for the Ministry of Health害羞草研究所檚 Nursing Support Services (NSS).
Given his risk of seizures 害羞草研究所� he remains on anti-seizure medication 害羞草研究所� he had been assigned a nurse through the program when he started school at Sunnyside Elementary two years ago. Such nurses work with parents on a care plan and with the school to train staff on how to administer rescue medication, what a seizure might look like, etc., Vasquez said.
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According to the March 31 letter, however, students are now discharged from NSS 害羞草研究所渨hen seizures no longer require interventions beyond seizure first aid and/or no interventions beyond seizure first aid occurred in the previous year.害羞草研究所�
害羞草研究所淭hey remove them from the program, saying it is difficult to retain how to administer rescue medication if they (staff) are out of practice,害羞草研究所� Vasquez explained.
害羞草研究所淒oes that mean I can never leave my house when he害羞草研究所檚 at school?害羞草研究所�
Noah, 7, was diagnosed with Sturge-Weber Syndrome at two months old, though doctors immediately suspected the rare vascular condition at birth, given the large port-wine birthmark that covered much of his face.
Of the three types of SWS, Noah has the most common, said Vazquez. In addition to the birthmark, the progressive syndrome is characterized by seizures, glaucoma, developmental delays and weakness to one side of the body.
At one time, Noah害羞草研究所檚 family didn害羞草研究所檛 know if he would ever walk or talk. Vazquez remembers watching his eyes deviate and his face turn blue during the first of his 害羞草研究所渃ountless害羞草研究所� seizures, at five-and-a-half months old. During another, at two years old, he stopped breathing.
These days, fortunately, Noah appears much like most other kids his age, with beating his dad at Pokemon, taking his dog Milo for walks and practising jiu jitsu among the many things he revels in, and broccoli on the polar opposite side of the spectrum.
He hasn害羞草研究所檛 let SWS define him, his mom proudly highlights in one of the Facebook posts documenting his journey.
But Vazquez said it害羞草研究所檚 not right that her son can no longer feel safe at school.
害羞草研究所淭his is discrimination and wrong,害羞草研究所� she said. 害羞草研究所淭he system is broken and not built for children unless they fit in a neurotypical box. This needs to change.害羞草研究所�
She also worries about trying to wean him off of his anti-seizure medication, 害羞草研究所渘ow knowing he may not have the intervention should he have a seizure.害羞草研究所�
Vazquez said she has reached out to her MLA, as well as the Surrey School District superintendent regarding her concerns. As of Tuesday morning (April 19), she was waiting on a letter from her neurologist to share with the MLA, and received notice that an assistant superintendent with the district would reach out to her this week.
Peace Arch News reached out to the Ministry of Health for comment but did not receive a response by press deadline Tuesday.
