It91裸聊视频檚 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 91裸聊视频� 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 he91裸聊视频檒l need in time.
91裸聊视频淲ith zero exception to the rule91裸聊视频� 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,91裸聊视频� the South Surrey mother said.
91裸聊视频淲hat if the ambulance doesn91裸聊视频檛 arrive within three minutes? What if they don91裸聊视频檛 have what he needs?91裸聊视频�
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 Health91裸聊视频檚 Nursing Support Services (NSS).
Given his risk of seizures 91裸聊视频� he remains on anti-seizure medication 91裸聊视频� 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.
READ ALSO:
According to the March 31 letter, however, students are now discharged from NSS 91裸聊视频渨hen seizures no longer require interventions beyond seizure first aid and/or no interventions beyond seizure first aid occurred in the previous year.91裸聊视频�
91裸聊视频淭hey remove them from the program, saying it is difficult to retain how to administer rescue medication if they (staff) are out of practice,91裸聊视频� Vasquez explained.
91裸聊视频淒oes that mean I can never leave my house when he91裸聊视频檚 at school?91裸聊视频�
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, Noah91裸聊视频檚 family didn91裸聊视频檛 know if he would ever walk or talk. Vazquez remembers watching his eyes deviate and his face turn blue during the first of his 91裸聊视频渃ountless91裸聊视频� 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 hasn91裸聊视频檛 let SWS define him, his mom proudly highlights in one of the Facebook posts documenting his journey.
But Vazquez said it91裸聊视频檚 not right that her son can no longer feel safe at school.
91裸聊视频淭his is discrimination and wrong,91裸聊视频� she said. 91裸聊视频淭he system is broken and not built for children unless they fit in a neurotypical box. This needs to change.91裸聊视频�
She also worries about trying to wean him off of his anti-seizure medication, 91裸聊视频渘ow knowing he may not have the intervention should he have a seizure.91裸聊视频�
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.
