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Arya


Boone

In the spring of 2024, Arya became a Guelph Wish Fund for Children wish child, marking a significant milestone in her extraordinary journey. Arya's story is nothing short of miraculous—a 22-year dream come true. She entered the world 5.5 weeks early, immediately showcasing her fiery spirit and fighting nature.

 

From the very beginning, Arya faced numerous health challenges. Her first year was marked by undiagnosed seizures, which culminated in a grand mal seizure on the day of her first birthday party. Following a 24-hour hospital stay, Arya was diagnosed with epilepsy. Despite this diagnosis, her anti-seizure medication failed to control her seizures, prompting her neurologist to delve deeper into her condition.

 

Two weeks after her initial diagnosis, a comprehensive panel of 320 different tests revealed that Arya has a rare genetic condition called KCNA2. This condition affects the regulation of potassium in her brain. Arya’s specific case involves a loss of function, meaning her brain receives insufficient potassium, impacting her lower limbs and speech.

 

At 15 months old, Arya faced significant physical challenges—she could not stand or walk independently and did not crawl on all fours. However, her determination shone through as she mastered a mean military shuffle, often winning races with her indomitable spirit.

 

Arya's case of KCNA2 is so rare that her doctor had never encountered it before. He reached out to specialists in Melbourne, Australia, and Denmark to understand the appropriate treatment protocols. Arya is only the second documented case in Canada, with fewer than 200 cases worldwide.

 

With the support of the Guelph Wish Fund for Children, Arya was able to get a specialized monitor that alerts when a seizure occurs, with the results going directly to her doctor. Thanks to the generosity of our community, Arya’s family can now ensure her safety and well-being, giving them peace of mind and allowing them to focus on cherishing every moment with her.

 

Despite her immense challenges, Arya’s story is one of hope, resilience, and the unbreakable spirit of a little girl who continues to inspire everyone around her. As a wish child with the Guelph Wish Fund for Children, Arya’s journey is a testament to the power of perseverance and the incredible support that can make dreams come true. We are honored to be a part of Arya's journey and can't wait to see all the wonderful experiences and opportunities that await her.


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