Today I introduce to you another warrior and his battle with SMA.
Weighing in at darn near 32 pounds and measuring 43" tall, taking on SMA one day at a time, from Olathe Kansas....Ladies and Gentlemen I give you "The BUG"
Jadon Burks, our beautiful boy, was born on June 25th 2009. He left the hospital with a clean bill of health, a football, a stuffed chainsaw, and a nickname of “The BUG”. Six weeks later we felt he wasn’t moving his arms like he should be and on his two month birthday a diagnosis of Spinal Muscular Atrophy (SMA) was given. These were three horrible words we had never heard but will now never forget.
Our life was turned upside down and inside out. All of our dreams of what his life would be were shattered. All of our dreams of what our lives should be were shattered. We had to find a new normal. Every day is filled with worry but we also want to live. We quickly adopted the saying:
“Life is not about waiting for the storms to pass,
It is about learning to “Dance In the Rain”
Weighing in at darn near 32 pounds and measuring 43" tall, taking on SMA one day at a time, from Olathe Kansas....Ladies and Gentlemen I give you "The BUG"
Jadon Burks, our beautiful boy, was born on June 25th 2009. He left the hospital with a clean bill of health, a football, a stuffed chainsaw, and a nickname of “The BUG”. Six weeks later we felt he wasn’t moving his arms like he should be and on his two month birthday a diagnosis of Spinal Muscular Atrophy (SMA) was given. These were three horrible words we had never heard but will now never forget.
Our life was turned upside down and inside out. All of our dreams of what his life would be were shattered. All of our dreams of what our lives should be were shattered. We had to find a new normal. Every day is filled with worry but we also want to live. We quickly adopted the saying:“Life is not about waiting for the storms to pass,
It is about learning to “Dance In the Rain”
When we want to just stay in and take it easy, and “be safe” we realize that we need to get out and take Jadon “Dancing”. Sometimes that is harder than others and sometimes it just doesn’t happen, but we always try. Jadon has taught us more about life than we could have ever taught him. While we would never ever, ever, ever, ever, wish an SMA diagnosis on anyone, we feel so incredibly blessed to have Jadon in our lives.
"Embrace The Suck"
To Keep tabs on Jadon you can visit his website http://jadonshope.wordpress.com/
To donate towards finding a cure for Jadon and his friends http://www.sophiascure.org/donate
Tony's [dad] latest facebook post is asking for Prayers, post operation. "Need some prayers. When we decided to do a trach we knew there would be a possibility that Jadon would lose the ability to make sound. The general rule we have heard is that if they could make sound before they can after, but every kid is different. They change his "surgery trach" tomorrow and that will be the first time he could possibly make any although we won't expect it right away. We would like prayers for sound. . I will tell you the silence is horrible. Thank you guys for all of your support."
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