What is SMA?
(Spinal Muscular Atrophy)

  • SMA is the #1 genetic killer of children under the age of 2.
  • SMA is a degenerative disease that affects the muscles used for head and neck control, eating, swallowing, crawling, standing, sitting, and walking. 
  • One in every 6,000 babies is born with SMA.
  • One in every 40 people is a carrier of the gene mutation that causes SMA.  Two carriers have a one in four chance of having a child with SMA.
  • There is no treatment and no cure.
Our Maia was diagnosed with Type 1 SMA, the most severe of the 4 types.  The diagnosis of the type of SMA is determinate upon the physical milestones achieved.  However, symptoms of each SMA type varies with each child.  Among the many problems that children with SMA face, respiratory muscle weakness is the main cause of health complications leading to death in types 1 and 2. 

While organizations such as the Families of SMA (FSMA) and the Muscular Dystrophy Association (MDA) are working hard to find a treatment and cure for SMA, the Claire Altman Heine Foundation (CAHF) is dedicated to supporting population-based SMA carrier screening.  The SMA carrier test is a simple blood test sent to the laboratory to determine if a couple is at increased risk of giving birth to a child who will have SMA.  This test has been available since 1996.  But due to the lack of awareness of SMA, the public does not know to ask for this testing to be done.  For more information on SMA carrier testing, please visit www.preventsma.org.

Although Maia is limited in her physical abilities, her cognitive and social skills are far above average.  In fact, it has been observed that SMA children are very intelligent.  Maia is an incredibly bright little girl with the most lovable personality, and she amazes us every single day.

SMA Resources

          www.fsma.org 

          www.mda.org

          www.fightsma.org

          www.smasupport.com

          www.uniteforthecure.com

          www.smafoundation.org

          www.clairealtmanheinefoundation.org