After they did an xray and CT scan, they discovered he has a rare disease called Gorham Stout Disease (GSD), which is basically eating away at his bones. Half of his left rib cage has already dissolved. I will be out Monday and Tuesday, while the doctors figure out possible treatment options and care for him going forward. The disease is so rare that only 300 cases have been reported world wide. As of now, there is no cure for it. No one at Spectrum really knows the best way to treat it since they've never had a case of GSD. Spectrum Health staff will be reaching out to Boston's Children's Hospital, the leading research hospital on this type of disease, first thing Monday morning to consult them on Leo's case.
In the short term, I am hoping the doctors let us go home once the pneumonia is under control. I have no idea what long term care will look like at this point.
Your thoughts and prayers are welcome and appreciated."
As colleagues of Antonio, we are seeking donations to support the medical needs and travel expenses for his son.
- Marjorie G.
- Jessica Kuenster
- Jose Texidor
- Mary Adams
- Susana Murray
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