Variety has been there for Johannes since the beginning. At only eight months old, Johannes needed an emergency laminectomy to remove a blood clot in his spinal cord. The surgery involves the removal (and subsequent reinsertion) of vertebrae to ease the pressure caused by the blood clot. Variety covered the cost of a specialized body brace to ensure his spine developed properly after surgery and his father, Jamie, says “because of Variety, there is no scoliosis of the spine or deterioration in the strength of (Johannes’) back.”
But complications from the surgery left twelve-year-old Johannes with severe Type A hemophilia, which causes internal bleeding in his elbows, ankles, and other joints that cause him a lot of pain. Johannes often requires the use of a wheelchair to relieve pressure from his ankles and prevent further bleeds from occurring. For a time he was using a rusty, thrift-store wheelchair with missing and broken pieces after failing to qualify for government assistance.
In 2016, Variety came through once again with a brand-new custom wheelchair, providing Johannes with a safe form of mobility when government programs could not. Johannes is happy than he can now “go to school instead of having to stay home”.
Johannes and his family were so energized with positivity from their experience with Variety that they elected to undertake an experimental immune tolerance treatment. Johannes is on his third and possible final treatment to remove the inhibitor that triggered the onset of hemophilia after his laminectomy.Visit Website
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