My baby is a victim of SMA. The doctor said he has 18 months to live. Been looking all over the net for support and information and have found some. but there is none in my country or even in Asia that I’ve seen. My baby’s neurologist is encouraging me to start a support group or association to help other families who are dealing with or will be dealing with SMA. I do plan to start one but I really don’t know how. No experience. But I am determined. This disability will not rob me of my son. My baby might someday fly away to his new home but he will leave a legacy in here and he will always be with me—deep down in the fibers of my soul.
See more progress on: Start a Spinal Muscular Atrophy Association in the Philippines
1 comment:
I casually thought about starting an AS support group last year, but everybody thought of it as a joke, partly because I made it look like one, which was because starting a group is not a bit easy. Anyway, AS is nowhere near SMA in severity/gravity.
I am VERY detached from your current situation right now. I do not like it.
Hang tight.
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