Imagine losing your 3 week old daughter to an incurable disease called SMA type 1   OR imagine losing a daughter to an incurable disease a little after she turned 1 and then having faith to try again and losing the 2nd child to the same disease??? True stories that happened to us all before we reached the age of 30! We both lost our precious daughters to SMA type 1. Please read our individual stories on our blog at bellabenefit.blogspot.com

It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers.

An individual with SMA has a missing or mutated gene (SMN1, or survival motor neuron 1) that produces a protein in the body called Survival Motor Neuron (SMN) protein. This protein deficiency has its most severe affect on motor neurons. Motor neurons are nerve cells in the spinal cord which send out nerve fibers to muscles throughout the body. Since SMN protein is critical to the survival and health of motor neurons, without this protein nerve cells may atrophy, shrink and eventually die, resulting in muscle weakness.

As a child with SMA grows their bodies are doubly stressed, first by the decrease in motor neurons and then by the increased demands on the nerve and muscle cells as their bodies grow larger. The resulting muscle atrophy can cause weakness and bone and spinal deformities that may lead to further loss of function, as well as additional compromise of the respiratory (breathing) system.

 There are four types of SMA, SMA Type I, II, III, IV. The determination of the type of SMA is based upon the physical milestones achieved. It is important to note that the course of the disease may be different for each child.

 We think it is only fair that a parent expecting a baby or parents thinking about having a baby get the opportunity to know if they are gene carries or not. The four of us had no clue we were carriers until after we lost our daughters. Right now this prenatal testing is not required and very few people know about this horrible disease. We think each expecting parent should be educated on this gene and the possibilites they have to either being carries or their babies being born with Spinal Muscular Atrophy. That way if they are indeed carriers, they have the options to do several other alternatives with will include vitro fertilization and test the embryos using preimplantation genetic screening (PGS), adoption,  use donor sperm or donor eggs, not have children or if feeling like they have faith, try for one and prenatal testing (amniocentesis or CVS) at 12 weeks of gestation to determine if the baby is affected or not.

It's a simple blood test with one parent to determine if he/she is a carrier of the gene. If that parent is a carrier, the other parent can be tested.  If both parents are carriers of an abnormal gene, there is a chance that each parent will pass the abnormal gene on to their child. An individual with two abnormal genes for an autosomal recessive disease will be affected with the disease. When both parents are carriers, with each pregnancy there is a:
25% (1 out of 4) chance that the child will inherit two normal genes, and will be neither a carrier, nor affected with the disease
50% (2 out of 4) chance that the child will inherit one normal and one abnormal gene, and will be a carrier of the disease (but not affected with the disease)
25% (1 out of 4) chance that the child will inherit two abnormal genes, one from each parent, and will be affected with the disease

Please sign our petition to get the mandatory testing needed to find out if your a carrier of the SMA gene. Please pass this petition on to your OBGYN, Medical doctors, friends, family and healthcare system. Our goal is to get this prenantal testing MANDATORY!

Please share our blog after reading this and help us spread awareness about this horrible incurable disease. No one should ever have go to thru a horrible tragedy like this. We would like the world to know that a genetic testing for this disease should be mandatory to all expecting mothers!

 Valerie Trevino & Jackie Valencia