We are raising funds for Dustin and Ashleigh Holland, and our 3 beautiful grandchildren, Austin, Peyton and Hannah. Our 6 year old grandson, Austin, was diagnosed with an extremely rare genetic disease called KIF1A (or KIF1A Associated Neurological Disorder (KAND as it is called in the medical community) in November of 2016. Due to KAND's rarity, it took 2 years to fully diagnose him. Though Austin was one of only 26 in the world at diagnosis, he is now one of about 200. But, Austin's mutation is the most severe and one of only 10 in the world with that exact mutation. Unfortunately, Austin has some of the most severe symptoms.
With Austin's diagnosis, we as a family knew Ashleigh and Dustin would need family support and as a result, both sets of grandparents and 2 sets of aunts and uncles also moved to Carstairs to help.
This disease has left him severely disabled as he is unable to see, walk, talk, or sit. He suffers from refractory epilepsy (Lennox Gastaut Syndrome) meaning he is unresponsive to medication and was placed on a highly restrictive ketogenic diet to help control his seizures. He has multiple seizures a day and each one can range from 1-20 minutes at a time, with a 55-minute one his longest. Austin is also fed by g-tube as he stopped eating and drinking in June of 2019. Due to his blindness, Austin has to rely on his hearing for all sensory input. He also has cerebellar atrophy, meaning his brain is shrinking (think ALS for children). Austin has had 5 surgeries to date with more planned in the near future. He has had 3 sedated MRI’s, 6 EEG's, numerous ER visits, admissions and clinic visits. The family spends many hours at the Alberta Children's Hospital and we are extremely grateful to have it so close to us.
Because of Austin's extraordinary medical costs, Dustin has taken a job that allows them to pay for all medical expenses, but unfortunately, it takes him away from his family for long periods of time.
As Austin continues to grow, they are finding it increasingly challenging to lift him in and out of his car seat. His wheelchair alone is 75 pounds and is difficult to lift in and out of their current van. We have been researching wheelchair accessible vans (WAV) for the past year and cannot find any significant assistance for families with a child with disabilities. A wheelchair accessible van can cost upwards of $100,000; therefore we, extended families and friends, are hosting a fundraiser on April 10, 2020 to help cover some of the extraordinary costs associated with obtaining a WAV. We are reaching out to our community for support and are accepting monetary donations or items for a silent auction. As a token of appreciation, we will be acknowledging anyone who donates to our fundraising efforts.
Any donation will go directly into purchasing a WAV for this deserving family. To learn more about KIF1A, please visit kif1a.org
- Lee & Kiel Porath
- Jennifer Norris
- Erin Neuman
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