12 Nov What the ice bucket challenge meant to me…
It was a fun and creative way to raise funds and awareness to about a terrible disease. I loved how people participated, everyone loves a challenge.
But I did not. It was not due to being asked, as I was “nominated” many times. I did not tell anyone at the time that I was going to give money to my charity of choice. It was not ALS.
Of course you’re thinking “what a honest, yet horrible person“! I will tell you why.
I watched the videos about Pat Quinn, the creator of the viral phenomena and I was inspired yet sad for him, and suddenly thought about my brother, Mikey. Every-time I saw someone featured in a video, I thought of him. Michael Anthony.
My brother died at the age of 7 from what was labeled as Reyes Syndrome or “an unspecified virus”. He was beautiful, blond and blue eyed with a clever smile. I was his big sister by 3 years and was 10 when he passed.
I have felt guilt and sadness that his life was cut short my whole life, yet so appreciative of how meaningful my time with him was and how it forged who I am today. The Ice Bucket Challenge reminded me of my brother and my memories, and that should be enough, but it is not.
While it is still debatable in my brother’s autopsy if it was Reyes or perhaps a meningitis-like-virus that caused his death, my resolve is the same. I wonder how many people know about Reyes Syndrome other than “don’t give children aspirin”.
My brother had troubles with Hydrocephalus, a fluid build up in the skull as an infant. Think swollen soft spots, that why doctors check those in infants. He had a shunt put in as a baby and he suffered ongoing issues as an child when he caught viruses. A little cold could be a terrible headache for him.
His life was cut to a dramatic end when he was seven while during a possible virus or a common cold, he fell into a coma. It was in our 70’s decor living room. He was so small. He died two weeks later, after so many tests and surgeries.
It’s not all sad, as my time with him was beautiful. He made me laugh and I did for him as well, so much so that I did comical stand-up and stunts for him to make him smile when he had bad headaches. He gave me love and helped build character and empathy in me as a young child; a trait I value as do people around me. I admit that I am a little overprotective of my loved one’s, but also fiercely loyal, grateful, loving and appreciative of my inner circle of loved one’s. Above all, I have empathy. I try to understand the shoe’s others walk in, and I am grateful for what I have been given (the good and the bad). I think he helped me be who I am not only when he was living, but also when he was gone. Mourning can rip you apart if you let it, but it can also build you up (eventually).
His death is part contributed to my parents having a third child, ergo my amazing, super smart and funny brother Ken (who is 11 years my junior)!! How could I not be grateful?
So the Ice Bucket Challenge reminds me of him, as he died of a little know horrible illness much like ALS. I think of his legacy. What have I done to promote it? I am a pro-active kind of gal, so I recently sat back and thought…what can I do? My brother was not a Ice Bucket kind of memory he was more like a warm blanket on your shoulders on a cool and sunny day….
I want to take this opportunity to remind / tell people about Reyes Syndrome and create of an awareness of what it is and how to be knowledgeable about it. If you have children or grandchildren, educate yourself in this terrible disease. There is no challenge other than familiarize yourself as to the symptoms. If ever needed you will have the information.
A link to the Reyes Syndrome website is here, and this is where I donated as my charity of choice during the Ice Bucket Challenge, for my brother.
Please support and donate to ALS as well, I will, as it’s my nature.