OC Woman, Her Mom Start Organization To Battle Child-Killing Illness
Links & Numbers
Websites and phone numbers from stories you saw on CBS2 and KCAL9:
SAN CLEMENTE (CBSLA.com) — Spinal Muscular Atrophy is the number one genetic killer of children and infants.
And yet very few people have heard of it. The disease causes a loss of nerves in the spinal cord and the muscles around it. It impacts the person’s ability to stand, sit, eat and breathe.
Jessica Prendiz, an Orange County mother, never heard of SPA but when her baby daughter — Hannah-Rose — contracted the fatal disease, she decided she couldn’t sit idly by.
Even though she was told “your child will not live to see the age of 2, take her home and love her,” Jessica and her mom did more.
They started HopeForSMA.org — a non-profit group that helps educate and raise money for SMA awareness. (Find out about an upcoming fundraiser and ways to donate on their website.)
Nearly 10 million Americans carry the gene responsible for SMA. There is no treatment and no cure.
Hannah-Rose died in December 2009, just shy of 11-months-old.
Prendiz and her mom have been working tirelessly ever since to help other families.
Family #3 – That would be us. Jessica, is Hannah’s Mommy – she was also a single mom to Hannah-Rose. Hannah’s symptoms started at about 4 months of age and was diagnosed at six months of age and passed away just a few days into her 11 months of life. Jessica and I started HOPE for SMA because there is so little help for SMA Families and because no one ever hears about this disease until it affects them. With such a deadly disease out there that is killing our babies – people need to be more informed about it.
If you get a chance, please visit our website at http://www.hopeforsma.org and click on Hannah’s story – that will give you a great idea of what SMA Familes go through, that is a 3 minute video clip. There is also an SMA Presentation on our home page that tells more about our foundation, etc. The other important thing to mention is, that these little girls are so medcially fragile, please make sure that none of the crew members are sick as one little cold could endanger their lives.