Our world has been turned upside down as our family struggles through a very difficult diagnosis. As many close friends and family know, our son, Asher, was diagnosed with Spinal Muscular Atrophy (SMA) nine years ago...
On February 25th, our daughter, Olivia (aka Ollie Gator), was living her best life being a playful, energetic 10-year-old on the playground when she twisted her ankle running up some stairs. This seemingly minor childhood injury has turned into a devastating medical condition.
Ollie has been diagnosed with Complex Regional Pain Syndrome (CRPS), a rare but strongly debilitating pain disorder, like an autoimmune disease of the central nervous system. CRPS is considered to be “The World’s Most Painful Disease” and also called the “The Suicide Disease.” CRPS can get worse overtime and may spread from the source to other areas in the body. This is why diagnosing and treating it early is so important.
Ollie is currently suffering in her right foot/ankle from exaggerated pain response to stimuli, extreme pain flares/attacks/episodes, loss of movement in her foot, and loss of feeling in her toes, and pain has progressed to spasms in her entire right leg.
Our world has been turned upside down again as our family struggles through another difficult diagnosis. As many close friends and family know, our son, Asher, was diagnosed with Spinal Muscular Atrophy (SMA) nine years ago. We are heartbroken that Ollie’s journey now faces a complex medical condition, too. But we have hope that early treatment will make a difference in her life like it made a difference in Asher's life.
As you can imagine, the cost of Ollie's care is extreme just like it is for Asher. Even with insurance, we are facing many out-of-pocket expenses, such as rehabilitation therapies, medical devices, and full-time home health care. We cannot get through Ollie's diagnosis coupled with Asher's medical care without the support and love from those around us. Please join Ollie's journey to remission and our family’s story of perseverance.
Our family needs your support now more than ever.
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