We just found out that my son was actually misdiagnosed. After thinking that my baby was going away for good and suffering with that knowledge for months, we were told that he actually has a different genetic defect. The symptoms are similar to SMA in the begnning but is pretty much the opposite of it when the the baby hits the toddler stage. Not only will Sam be with us for a long time, he’ll also be able eat, sit, walk and do pretty much everything on his own. The crazy thing about the disease is that kids are usually tube-fed when born due to weak muscles and then gradually grow in strength until they can eat by themselves and not only that but they usually end up obese because they never feel satiated! So change of plan…will start the Prader Willi Association in the Philippines rather than SMA.
Entries
Change of plan
2 years ago
Sam
3 years ago
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.
