The Spira/Guelph Wish Fund for Children teams headed to Sauble and Sunset Speedways with Billy heading to Sauble as the rest of the team headed to Sunset Speedway with their hero cards and treats for the kids as it was to be the tracks Fan Appreciation Night. With Billy leading the points at Sauble Speedway, the #86 team has decided to run the rest of the regular points nights at the track. With Billy recently being ranked #1 in the Fast Eddie Top 10 Mini Stock Power Rankings, the team will continue with their aggressive schedule to keep him there, promote their sponsors and donate their winnings to charity.
Before Jake and Samantha arrived at Sunset Speedway, that the rain settled in and the days event was cancelled and although the radar showed the rain staying south of Sauble Speedway, it arrived after four practice sessions and the Sauble event was also cancelled due to the rain. Spira Racing would like to share a letter received from a Guelph family that after exhausting other charitable organizations for help, saw the Guelph Wish Fund for Children decal on one of our cars and called them for help.
Here is their story…….Niko’s Story…..starts a month after his first birthday, when he had his first seizure lasting ten minutes. It was only the beginning of many seizures and diagnostic tests this year in order to determine what was happening. When a genetic test was completed and came back positive for a Sodium Channel Mutation, our lives turned into a frenzy of worry, fueled by fear and confusion. What is going to happen to my little boy? Will he grow up and have an independent life? Will he go to college? Learn to speak? Drive? Niko loves to play, dance to music, laugh, and smile. Will I lose him? Is he going to change? No one has ever heard of Dravet Syndrome. Limited resources are in place to help support us through this life changing diagnosis. His future is uncertain, as he grows the disorder can impact him greatly, or very little-no one knows.
Night by night, we sleep with him to make sure he doesn’t have a seizure in his sleep, supervise his play, and when he is sick try to prevent a fever. Dravet Spectrum disorders are rare genetic epileptic encephalopathies (dysfunctions of the brain) that usually appear in the first year of life in a healthy infant. The spectrum of clinical symptoms range from a mild spectrum (febrile seizures) to severe known as SMEI (Severe Myoclonic Epilepsy of Infancy). Frequently uncontrollable, caused by a mutation in the SCN1A gene, characterized by seizures that may be prolonged. The risk of status epilepticus (Medical Emergency related to prolonged seizures) and SUDEP (Sudden Unexplained Death in Epilepsy) are daily concerns. Overtime the seizures may evolve, and become resistant to treatment. Multiple drug therapies may be needed to obtain seizure control. I started to call around in order to identify what was in place to support Niko, and help us purchase a seizure monitor for his bed.
No success, until being directed to call Guelph Wish Fund for Children that was seen displayed on a Spira Racing car. I called thinking, I won’t qualify but I’ll give it shot. I told them my story, what I needed and how it would help impact our life in a positive way. Without meeting me, requesting proof of medical condition, or any other personal information, they said yes. I was so overwhelmed, shocked and excited. I got a “Yes, purchase the unit, make sure you express it, and I’ll cut you a check”. From that moment on we knew that we would always be a part of the “good fight” for Dravet research and treatments. Knowing organizations exist in our own community that actively support local families with a variety of medical conditions and are supported by such good people as the Spira Race Team, has lit a fire in me do my part as well. Not only to ensure that my son gets the best treatments and care available, but to advocate for more research, better drugs, and support other families who need support as well.
We want to thank the Guelph Wish Fund for Children and Spira Racing for all of your support. Our hope for our son is that he grows and reaches his maximum potential, with the right supports and treatments in place to keep him safe.Thank you so much, keep me posted on the newsletter and forward me information regarding a race, I would love to take Niko to see one, he loves cars and calls them “Auto”. A loving Guelph Family!
For more information on Dravet Spectrum disorders, visit their website at www.dravet.ca
