A rare blood disorder (Catastrophic Antiphospholipid Syndrome) almost killed him before discovering a tentative treatment, but not in time to keep him from losing both of his kidneys. And then came dialysis for two years before a friend gave him one of his healthy kidneys (Thank you, Bucky) in a first ever transplant for any of the 200 people alive with this blood disorder. (New England Journal of Medicine, May 2010) This transplant included a unique "miracle drug" (Eculizumab) administered through a trial at The Johns Hopkins Hospital in Baltimore, Maryland which locked him into twice a month infusions of that drug, requiring a five hour trip from our home in Virginia up and 5 hours back every other Tuesday.
In the eight years since the transplant, my husband has had two episodes of staph infection in his blood, causing two more near death experiences requiring helicopter/airplane flights back to Hopkins, including life support on a ventilator and eventual healing.
Most recently, while on the ventilator, one of his native kidneys (both left in the body after transplant) burst into two pieces causing extensive bleeding, many strokes and ultimately ten weeks in a coma like state. And after nine months there in the hospital at Hopkins, he came home in a wheelchair, unable to walk, with very little movement in his right arm/hand...but a relatively normal mind/brain.
The battle now is his...to WALK again!!!
And now, we need HELP...
After months at an amazing outpatient center, ODU Monarch Physical Therapy in Norfolk, Va, we are finding Scott's next step includes a different wheelchair...one that lets him use his legs, which are becoming stronger each week, and his left arm, as his right one is continuing to "wake up" and work better.
We have also discovered a new tool called a Standing Frame which allows Scott to stand without aide for longer times, building strength in his trunk which is necessary to WALK again.
With in the next few weeks, we need to raise support to pay for these requirements in Scott's STEPS forward to WALKING...
And...could you please include a few prayers for moving forward in this unexpected, sometimes crazy, life we call DIVINE CHAOS!
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