Connor is almost 23 months old. At 3.5 months old Connor was diagnosed with a devastating condition, Spinal Muscular Atrophy Type 1, the most severe form. SMA is a very severe form of muscular dystrophy. Connor was given 4 weeks to live when he was discharged at 5 months old from our first hospital stay which lasted 8 weeks. We have have spent over 150 days in the hospital in Connors short life, and we cant get him stable for long. Because of his condition he is unable to breathe on his own. Connor has many indications that he is under ventilated but we cant seem to find a happy medium with our current team of doctors. Since Connors diagnosis we have dreamed of seeing an SMA specialist, specifically Dr. Schroth, an amazing doctor that has devoted her life to caring for our kids and learning how to keep them alive. It has always been a dream, but we have been constantly trying to give our doctors the benefit of the doubt, and it has come at Connors expense. We need Connor to see Dr. Schroth, Connor deserves the best quality of life with the hand he was given. We we tried to encourage our doctors to help us get insurance coverage to go out of state to see Dr. Schroth, they rejected our request. We have received an estimate for a clinic appointment with Dr. Schroth paying out of pocket and we are able to have clinic with her for $793. We will officially have our appointment scheduled next week, they are seeing where they can fit us in. We are elated, but very nervous, it is a 6+ hour drive and we will need to stay in Madison, this extreme traveling is a lot on Connor but we feel his health will benefit from it. Please help us get to Madison to see Dr. Schroth! Connor is unable to sit, talk, breathe or eat, we have dedicated our lives to fighting to give him the best quality of life, and we feel strongly that this is our next step. To see Dr. Schroth would enable us to have her as our lead in caring for Connor and working closely with his doctors here in Michigan. This would also ensure us the ability to change Connors main doctors closer to our home instead of needing to drive 3 hours for care and hospitalizations every other month. We feel a lot of positive will come out of this visit!! Please help us get to Madison! Connor needs and deserves an SMA specialist!! Connor also has a YouCaring (youcaring/connorgoestomadison) to allow more donation options, we will update both with offline donations to reflect the amount actually raised. Thank you all for your support!!
Posted on: Mon, 11 Aug 2014 18:10:26 +0000
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