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Remember the saying, April showers bring May flowers? Well, South Dakota is growing more than flowers! Scientists and Physicians from across the country are merging on Sioux Falls to begin working to bring a world-class research facility to the Midwest.
The much needed facility will focus on a group of disorders affecting children like ours. We of course are talking about an area of science many doctors across the country and around the world are not familiar with. Sanford will be the voice to help us change that, creating awareness and opportunity.
I remember when Clara was little, the physicians would say, 'Well we don't know how long she'll live.' So as a parent obviously you keep waiting, waiting, waiting. thru all the illness episodes ...And at some point you have to shift gears and realize you must begin to plan for the future. Clara will be 21 this year.
We know for a child with CDG, the common cold, could mean time spent in the hospital sometimes critical time sometimes sadly we loose them all to soon to something that can seem so simple. But now with Sanford doing research and a dedicated research facility, Clara and so many others are even more hopeful for a long full-filling life. The knowledge we can collect and use will help create a better future for our kids.
Dr. Eugene Hoyme with Sanford Children's says, “What Sioux Falls will serve as is a place where there can be a central site where families can get information about the condition. Perhaps there can be a place where we can collect data.”
This can be the bridge that gets everybody the services they need and that's absolutely a phenomenal start.
Cindy Wren Gray
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