Vicki - I have a book called Raising A Child with a Neuromuscular Disorder - A Guide For Parents, Grandparents, Friends and Professionals. It's by a neurologist by the name of Charlotte Thompson, MD. There is a section where she gives details by disease. I did find a section called alpha Sarcoglycanopathy - not sure if that's the same thing that you referred to above.
It is a type of Limb Girdle MD - and it is inherited - autosomal recessive with a gene coming from each parent.
The age of on set is early childhood
Gene loc. is 17q.12-q21.33.
The affected protein is alpha sarcoglycan, called 50kDAG (Dystrophin- associated glycoprotein)
The abnormality is absence of or decreased of alpha sarcoglycan.
Progression - extremely variable
Initial signs - enlargement of calves, and weakness in muscles close to body (proximal)
Lab findings - CPK (muscle enzyme that is measured) can be quite high
Muscle Biopsy - large fibers may be seen and splitting of fibers can also occur.
Initial signs - enlarged calves can be present, plus weakness in muscles close to body or proximal muscles.
Later - loss of ambulation can occur at age 12 as rapid progression of muscle weakness occurs.
Comments - Respiratory difficulties are not as prominent as DMD and heart involvement may not occur or just could be mild. The back should be checked for signs of scoliosis or curvature of the spine. Also, muscle contractures may develop. I would assume (this is me) that stretches would help - talk to PT
Treatment - daily exercise - like swimming, ongoing physical therapy.
Note - dr. says that pulmonary and cardio care can make a big difference as well as quality of life.
I would first google the name and see what you come up with. Check MDA.org site....Look for books on that specific MD. It may be rare but I think you can find info on it - esp. with computers now. Don't know if steroids would be an option or not - might slow disease...See if your doc. can recommend a neurologist. We go to Dr. Wong in Cincinnati....she is wonderful - our son has DMD.
Good luck. Char Burke