SMA (spinal muscular atrophy) is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants. There is currently no cure.
Most babies diagnosed don't live past their 2nd birthday.
February 15th we were transported from Mary Washington hospital to Richmond VCU, due to respiratory issues. He tested positive for the rhinoentro virus, basically a common cold but for him it's life threatening.
Wednesday, we had a family doctor meeting to discuss whether the nasal bipap was enough support for him or not.
The following morning, at about 6 am, alarms and red lights were going off. Doctors and nurses immediately by Jackson's side. His oxygen levels dropped from 90 to the single digits in a matter of seconds. The doctor said, "we going to have to intubate him." That just ensured he needs the tracheotomy.
As of today, we are looking at surgery for his feeding tube in his stomach and for his trach next week.
We appreciate EVERYONES support. This is one trial, that NO ONE should ever have to go through.
Jack Jack is love by so many and has shown courage BEYOND his years at only 6 months! You are a WARRIOR my sweet sweet Angel, an SMA WARRIOR!
Now, let's spread some awareness!
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