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Letter to the Editor: Thanks for article on RSD.
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Anonymous user Tue Oct 24, 2006 16:39:29 PDT
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0 responses 0 comments Dear Editor,
Our family just wanted to send you a huge thanks for the article you wrote about Ashley Goodall, the girl who suffers from Reflex Sympathetic Dystrophy. It touched us beyond words. Our son Dylan also has RSD, so we took great comfort in knowing there is another family here in Bakersfield to reach out to, who knows first-hand what a horrible condition this is.

As a parent, there is nothing worse than watching your child in pain from head to toe, with ice cold hands and feet, unable to be touched because the skin is also effected. Imagine not being able to hug your child when he or she is sick? Or making sure the ceiling fans are off because even the slightest breeze feels like needles on the skin? We had tremendous feelings of helplessness as this mystery illness took control of our son.

For three years following an ankle injury, our son would complain of pain and doctors couldn’t determine what was causing it. Then finally, following a two-day soccer tournament, he collapsed at school and was unable to walk.

Gradually, the pain became worse, spreading through his body, until he was forced to spend much of his fifth and sixth grade years on crutches or in a wheelchair. Still, the doctors couldn’t give us answers. How many parents right now are in desperate need of a diagnosis because their child is experiencing mysterious pain and answers are not coming from the many blood tests, bone scans, and x-rays which come back “normal?” Maybe there are other parents who read your article who recognized the symptoms Ashley talked about and will follow-up with their physicians to catch RSD while it’s still early. While there is no cure, there are ways to help manage it.

 Dylan received his diagnosis of  Type I RSD last November, at 11 years old. Since then, we are better able to control his flare-ups. We still hold our breath with each cough since a simple cold can trigger RSD pain, which Dylan describes as a hammer constantly beating on his body. A minor injury can spread to severe pain throughout his body, so he is unable to play his favorite contact sports, football and club soccer, like his friends.

Now, when Dylan tells us that he is starting to hurt, we know to get our hugs in immediately because it could be days before we can touch him again. Through it all, however, Dylan has an incredible spirit about him. I believe you will find that a lot in kids with RSD... even a smile that says, “Hey, if I can get through this, I can get through anything.”  We appreciate each and every healthy day with our children.

Ashley is a young, determined, phenomenal woman who is going to make huge strides for others, like Dylan, with RSD. Thanks again for choosing to write about such a rare condition. You helped our family find support through another local family and helped to raise awareness of RSD. I’m confident that the people in this community will do their part to help with Ashley’s fundraiser. We know personally what a worthy cause she is speaking out for.
 
Sincerely,
Tracy Rivera 

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