WHAT IS SMA:
Spinal Muscular Atrophy
SMA IS THE #1 GENETIC KILLER OF BABIES UNDER 2 YEARS OF AGE
1 of 6000 babies is born with SMA
1 of 40 people is a genetic carrier of SMA
80% of SMA babies die before reaching the 1st year
Babies with SMA: They cannot lift arms or legs, they have no head control, they cannot sit or walk, they cannot swallow, and they cannot control any voluntary movement.
Babies with SMA have respiratory deficiency as their lung muscles are very weak and require mechanic assistance through Bi-Pap ventilators.
SMA does not affect the mind. Many SMA survivors are productive adults such as counselors, lawyers, ad web designers.
LIFE AFTER A SMA DIAGNOSTIC
You have a beautiful healthy baby. Four months later, your baby has a respiratory arrest, both of her lungs collapse, she needs to be intubated... In the hospital they tell you that the baby has Werdning-Hoffman, will need mechanic ventilation to breathe, a gastric tube to get her food, she will never get out of bed, and she will die anytime within one year. You are told that the best thing you can do is to take your baby home and give her lots of love, as her illness is fatal and has no cure and no treatment, and wait for that final moment.
That is what so many families hear, and that is exactly what we heard. But, guess what... We do not believe in expiration dates for any living being. We believe in God, and it is Him who takes charge in our lives.
Doctors offer a fatal prediction of what will happen after a baby is diagnosed with SMA. Thanks to statistics, babies get a death sentence that has no established date. For the parents it is very important to learn all that they can about SMA to be able to handle everything that they are going to face after such a diagnosis. It is important to know the Consensus of Care from 2007, the different alternatives to handle this illness, and to be aware of all the medical efforts to establish treatment and to find a cure for SMA.
You must make sure that your sources of information are reliable. We personally recommend SMA Support Group (in Yahoo groups, made of parents and SMA patients who share information and respond to forum messages almost immediately) and SMASpace (another reliable network of support made of parents, caregivers and some professionals who deal with SMA at all times). The best way to deal with SMA is to share your experiences, and ask questions to other parents. It is best when we all share and learn from all of our experiences.
SMA is not the end. Anyone can die anytime, but not everyone really lives. Follow your heart when you deal with your baby, but be certain that you should not just wait for an expiration date to just happen. In our day and age, there are many resources, technology, support, and information which are increasing the lifetime and outlook of SMA patients. It is possible to fight SMA. It is possible for some babies to live with SMA and grow, and lead happy productive lives. It is possible to truly live!
EVERYTHING ABOUT SPINAL MUSCULAR ATROPHY
BASIC IMPORTANT DOCUMENTS IN PDF
SMA Consensus of Standards of Care 2007
LETS DESTROY THE SMA MONSTER!
DEIRDRE MEDINA's DAILY CARE HANDBOOK
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