Fighting for her Life in Cherry Valley

 

Cherry Valley-Wanda and Jim Dodaro have been residents of the Cherry Valley area for 6 years.

On Jan. 6 of this year, they gave birth to a beautiful 7 1/2 lb. baby girl, who they named Samantha.

Their new daughter seemed to be a perfectly healthy little girl, but as the weeks went by, Wanda and Jim noticed Samantha was not reaching the typical milestones of an infant.

She was not reaching for things, holding her head up or kicking her feet.

Wanda and Jim were concerned, took her to the pediatrician, and within 24 hours, 5-month-old Samantha was diagnosed with Type I Spinal Muscular Atrophy or SMA, a disease her parents had never heard of until that day.

SMA is an inherited genetic disease affecting the anterior horn cells.  The anterior horn cells are located in the front of the spinal cord.  SMA affects the voluntary muscles for activities such as crawling, walking, head and neck control and swallowing.

The senses and feelings of a SMA patient are normal as well as the intellectual activity.  In fact it is often observed that patients with SMA are usually bright and sociable.

SMA is typically classified into four categories with Type I being the most severe affecting infants.  Death usually occurs within two years of birth.  Type 2 affects toddlers, Type 3 affects adolescents and Type 4 is adult onset.

Spinal Muscular Atrophy is a genetic disease.  It is an autosomal recessive disease, which means that both parents must be carriers.  Although both parents are carriers the likelihood of passing this gene along to a child and having an affected child is 25% or 1 in 4.  1 in 40 people are carriers of the gene and 1 in every 6,000 live births is affected.

Spinal Muscular Atrophy is the number 1 killer of infants, even more than Cystic Fibrosis.  Yet there is not a lot of financial support for research.

Samantha is now 7 1/2 months old.  With the help of physical therapy, she has achieved some muscle activity in her arms and legs.

Although her neck still remains very weak and at times she has difficulty swallowing.

Other than the lack of muscular activity, Samantha is a normal infant.  She is of normal intelligence; she laughs, smiles and cries.  She loves to play peek-a-boo, and loves talking to people.  Samantha sees a physical therapist once every other week and an occupational therapist twice a week.

Although Wanda does various kinds of therapy on her including hydrotherapy three to four times a day, Samantha's prognosis is very bleak.  The doctors do not expect her to reach her second birthday.

The Coldwell Banker Kivett-Teeters Real Estate office in Yucaipa, where Wanda has worked for nearly three years, is trying to raise funds for SMA awareness month.

Anyone interested in making a tax-deductible donation, can make the checks payable to FSMA, and send them to Coldwell Banker Kivett-Teeters, 35006 Yucaipa Blvd.  Yucaipa, CA 92399, Attn:  Debi Glaser.

All donations will go directly to the SMA foundation for awareness, research and development.  Funding from FSMA has been used to develop a genetic test to accurately determine if a person has SMA and has also recently lead to the development of a mouse model with will be used to determine the effectiveness of drug therapies that are in the process of being developed.

This is very exciting to the parents of SMA children because it could slow down the progression of the diseases, with hope that some day they may even find a cure for SMA.

Even a donation of $5 can help find a cure for an infant like Samantha, says Glaser.

 

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