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spinal muscular atrophy
Posted by mickieouellette to Pediatric/Parenting, Mar 19, 2010 11:25pm
Recently, a friends was told her child has Spinal Muscular Atrophy (SMA). I had never heard of SMA prior to her child diagnosis. She has sent all of her family and friends links to information,to a petition for legislative funding toward a cure for SMA , and more! I thought that in the process of educating myself about my friends child's disorder, I could ask for you to do a show about SMA, with the hopes that you might feel compelled to help my friend and her family the many other families with children with SMA by supporting SMA research!
SMA affects muscles throughout the body, although the muscles closest to the trunk (shoulders, hips and back) are often most severely affected. Weakness in the legs is generally greater than in the arms. Babies with SMA often have difficulty sitting unsupported or cannot reach the crawling and standing milestones. Sometimes feeding and swallowing can be affected. Involvement of the respiratory muscles can lead to an increased tendency for pneumonia and other lung problems.
Spinal Muscular Atrophy is an inherited, autosomal recessive genetic disorder - it's also called a motor neuron disease. Motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. Approximately 1 in 6000 babies are affected and about 1 in 40 people are genetic carriers. Babies who have SMA inherit it from parents who are both carriers of the gene. Most people who are carriers never know they are carriers until they have children diagnosed with SMA.
My hope is that by spreading the word, that my friends child, will be able to live the happiest, healthiest life possible, as well all the other children that are diagnosed with SMA every day!
djlargent
Mar 21, 2010 2:45pm
Yes, please do a show on SMA! My son lived to 16 years old with SMA, the severest form, being ventilator dependent and tube fed. There is hope! Help parents learn and understand with a technologically advanced society, handicapped children can lead fairly normal and enjoyable lives. Having a handicapped child is not the end of the world, although it is difficult. Jeanette largent (The Weeping Mother) Myspace www.myspace.com/daughterofjerusalem
groc621
Mar 22, 2010 8:28am
My 3-month old son was recently diagnosed with SMA type 1. We are devastated and want to do whatever we can to bring awareness to anyone and everyone, especially those who have the power and the money to make a difference. SMA is the closest disease to a cure, yet because of funding and time, there is not one. This is not right. Thousands of babies and children are suffering tremendously from this disease. SMA robs these children of simple tasks such as lifting their heads, legs, crawling, walking, breathing, eating. It is torture for a parent to watch their child struggle just to swallow or cough. What is it going to take for the FDA to approve a treatment and a cure for this devastating lethal disease? Please, Please whatever can be done, let's do it. I will do whatever I can for my baby. I will not give up until there is a cure.