He lives is a constant state of pain. His nevers firing shots of pain through his body 24/7. An example of this pain is like being buried in an ant hole with the ants stinging you non-stop. He is the strongest 9 year old I know. He has even gone into organ failure. The side effects from steroids is a very long painful list. The suicide rate for TSW suffers is very high due to the pain they suffer 24/7. I don’t want that for my grandson.
My daughter has fought for his care for years. Trying every treatment under the sun. We are at the end of our rope. We need help. This Is debilitating where he cannot even go to school like a normal child. His siblings are hurting too because they hear the pain in the cries and screams from their brother. There are days when he is so bad and the only relief is to soak in the tub for hours upon hours. Where he cries to die due to the pain. It is heartbreaking and infuriating at the same time. A 9 year old who wishes for death. How could a doctor take the chance that this could happen?
There have been reports of this reaction since 1970.
There is a Dr in Beverly Hills that treats TSW. His insurance will cover treatments if we get to Beverly Hills! We need help getting there and also paying telemedicine fees for immediate help since Rylan cannot physically get there right now. My daughter has tried everything to help her baby. This dr seems to be the last straw for help. He needs help to go. Please help him.
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