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 Andris and Nancy
Dindzans found out their daughter Ariana had Type III SMA when
she was 2 years old. A child with Type III SMA is generally
able to stand and walk but may have difficulty with walking,
or may fall more frequently. They may also have difficulty
in getting up from sitting on the floor or a bent over position,
and may be unable to run.
In June, 2004,
Nancy, Andris and their two daughters, Maija, 6, and Ariana,
4, attended the FSMA Conference in Schaumburg, Illinois. Maija,
who does not have SMA, was profoundly impacted by the conference.
She met many of the SMA children and witnessed the enormous
number of people who were brought together by the desire to
cure this disease.
Nancy and Andris were encouraged and uplifted after attending the FSMA
Conference and talking to many of the other families affected by this
disease. FSMA is the largest international organization dedicated
solely to eradicating SMA by promoting and supporting research, helping
families cope through informational programs and support, and educating
the public and the medical community about SMA. The annual FSMA
conferences allow families and professionals’ hands-on techniques and
family-to-family support, while also giving the children a great
opportunity to make new friends and have a great time.
 Ariana will be 12 years old in May. She
is still walking, but she quickly gets tired after a few steps. A
school bus picks her and her scooter up (and soon, a power wheelchair)
to take her to school and back. We recently got her a walker to help her get around the house.
Ariana loves flowers, swimming, singing,
dancing, and playing on her DS. “I
really want to find a cure for SMA so I don’t have to wear my ‘boots’ (DAFO braces), and to be able to run and
keep up with my friends at recess,” Ariana says. Until recently, Ariana was taking Depakote (Valproic
acid) and Carnitine, resulting from her participation in a clinical trial
funded by Families of SMA. However,
because of the weight gain side effects and the lack of perceived
benefit to her strength at this time, we weaned her off last year. We're hopeful that the drug pipeline will yield results for her in the future.
Last June, we attended our fifth FSMA
Conference at Disneyworld in Orlando, Florida. They provide a fantastic
opportunity to learn more about SMA related issues, hear the latest updates
from the researchers, and meet other families who are dealing with similar
challenges. FSMA and the research they
are funding have really given us hope that a cure may be found in time to keep
Ariana walking, and give hope to so many others who are also fighting this
disease. |
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