We had to cut our vacation short because we got some very bad news and had to fly home yesterday. Our new granddaughter, Stella June, was diagnosed with Type I SMA (Spinal Muscular Atrophy) also known as Werding-Hoffman Disease (acute infantile). This is a very aggressive neurological genetic disorder. My son and his wife took the baby to the hospital late Thursday evening with breathing problems (one of the first symptoms) and by Friday morning she was on a ventilator. That's when he called us and asked us to come home and so we literally walked out of a presentation at my 40 year college reunion and headed for the airport but we couldn't get a flight out until Saturday morning.
Anyway, the doctors have told us that there is no hope since an onset at this young an age (she will be 6 weeks old tomorrow) is 100% fatal, often within days of being diagnosed. Even if everything went perfectly, she may only live another month or two, but she would be on life support and would be sedated for much of the time. Our son and his wife are going to have to make some very hard decisions over the next couple of days.
We ask that you keep baby Stella and her parents in your prayers.
Up until that point, our vacation was going really great, despite the fact that on Tuesday, while helping my sister-in-law fix the awning on her RV, I managed to break my left thumb and had to spend 3 hours in the ER having X-rays taken, getting 3 stitches in my thumb and then getting it splinted. We only wish to God that that had been the extent of the bad news.
OCU
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