Tuesday, August 04, 2009

August is...


SMA Awareness Month

Spinal
Muscular
Atrophy


The Disease
Spinal Muscular Atrophy (SMA), the number one genetic killer of children under the age of two, is a group of inherited and often fatal diseases that destroy the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control and even swallowing.
• SMA is the number one genetic killer of children underthe age of two.
• 1 in 40 people carry the gene that causes SMA
• SMA effects all ages, races and genders
The Types
SMA Patients are classifi ed into four types based on milestones achieved at onset of SMA. Type I and II are most prevalent.
• Type I is the most severe form of SMA. Type I SMA strikes infantsbetween birth and six months old. Children affected with Type I cannotsit without support. Fifty percent of Type I babies will die before their2nd birthday.
• Type II affects infants between seven and 18 months old. Type IIpatients may be able to sit unaided or even stand with support. They areat increased risk for complications from respiratory infections.
• Type III is the least deadly form of childhood-onset SMA. It strikeschildren as early as the age of 18 months, but can surface as late asadolescence. Type III patients are able to walk, but weakness isprevalent. Most patients eventually need to use a wheelchair.
• Type IV is the adult form of the disease. Symptoms tend to beginafter age 35.
For More Information:
Families of SMA
http://www.curesma.com/
Marshall's Miles
http://www.marshallsmiles.com/
WHY I SHARE THIS INFO...
I was first acquainted with SMA when I moved to Stamford as a child. One of the students in the sixth grade class where I went to elementary school had it. She had either Type II or Type III. Her oldest sister was also afflicted with the disease. She had one sister that was the middle child that did not have SMA.
Unfortunately, that was not the last time that I heard about it. Almost 7 years ago I heard the term SMA again. This time it was from a very good friend of mine. Laurie called me in FL to tell me that her son, Marshall(the angel in the picture above) had been diagnosed with SMA Type I. She was devastated and I was also for her and her husband Mark. Since then Mark and Laurie have had two children born without SMA, a beautiful daughter, Murphy, and another son, Anders. They started a non-profit organization, Marshall's Miles, in memory of their son to help families that need medical equipment not covered by their insurance companies.

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