On Saturday morning 9/1 we had to call 911, Cole had choked while eating. He was taken to Rady Childrens Hospital to be assessed. The doctors did not like how much he was struggling to breath so they admitted him into the PICU for advanced breathing assistance. They ran many tests as they thought he may have some sort of infection, but all those results came back negative. So the doctors started to look into other reasons for his weakness.
Cole has been diagnosed with SMA1 (Spinal Muscular Atrophy, Type 1). SMA describes the group of diseases in which a progressive degeneration of the spinal nerves causes a wasting of the muscles they control.
For Cole this means he is not strong enough to breath on his own. He also needs help with eating. On 9/26 he went into surgery for g-tube and tracheotomy.
The doctors say it will be about 2 months before we get to take him back home. There will be a lot of training on the trach and g-tube and getting our house ready for him.
There is a new treatment for SMA that has shown very good results in others with this disorder. A spinal injection of Spinraza. He received his first injection just before he went into surgery. It takes many treatment to see results, but we are hopeful that he will show great improvements.
Your thoughtful contribution will assist us in supporting Cole’s medical needs when we are out of the hospital, to help pay for equipment and visits to the doctors.
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