The story of Keenan
My name is Keenan and I was diagnosed with SCA3 (Spinocerebellar Ataxia 3) in August of 2019. My dad (Keith Boyd aka Sir Ron) taught me that no matter what happens, you trust in God, and make adjustments, not excuses. He passed on September 26th of 2018 due to complications from SCA3. I watched his Ataxia progress from the age of 14 when he was unable to play basketball with me anymore, to him having to use a cane for stability, to a walker to get around the house, to being bound to a wheelchair, then eventually the VA bought him a Mobility Scooter. I saw him eventually pass in a hospice bed, gasping for air with every breath. I have first-hand experienced the trauma associated with this disease.
Like the majority of Ataxia patients that I have spoken with, once I was diagnosed, the anxiety of my future cognitive and kinetic abilities was constantly at the forefront of my mind. I started to lose control and it caused a demoralizing, self-loathing, and selfish internal monologue. I allowed my thoughts and fears to limit my capabilities, drive, self-confidence, as well as my empathy for myself and consequently others. The constant lack of effort, self-discipline, and self-control ran rampant in my life and took a costly toll on my mental, emotional, and physical well-being as well as those closest to me. My thought process became completely unmanageable. I had taken for granted everything and everyone.
I had to take a step back and do some serious soul searching to remember who I was. After a couple of months, I came to the realization I had two options; either continue to bring everyone around me down by feeling sorry for myself, or trust in God, change my paradigm, allow Him to restore me to sanity, and fight to change the negative mindset that I had created for myself to make a positive impact on those who loved me. I’m a fighter and refuse to adopt a victim mentality even when the odds are stacked against me. I can’t change my past, but I can help someone else avoid the pitfalls and emotional damage that I had been subjected to and put myself through.
The Sir Ron Foundation was founded to serve those who have been diagnosed with Ataxia as well as their support system. Whether it be a patient, family or loved one, my goal is to educate and equip them with the education, services, and tool they need to be able to cope the right way, Â to help patients realize that they’re not alone in their daily struggles, and give hope to those who have been overtaken by anxious and fearful thoughts of the future.
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No matter what hand that life deals you, it’s up to you which card you play, and when.