We are exited to launch our new HOPE for SMA Store! 100% of the proceeds from this shop goes to support children battling Spinal Muscular Atrophy (SMA).
Here is our story:
Her name was Hannah-Rose. Born to our single 22 year-old daughter, Jessica. The news of the pregnancy was difficult on our family for a little while, but then we rallied together to prepare for the arrival of our precious Hannah. After an intense 13-hour labor and delivery she was finally here. We brought our precious treasure home and all was well for four months, but then every parent’s worse nightmare became our reality! Hannah began to choke during her feedings, could not hold her head-up, and was not able to move her legs and became weaker every day. She was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 – The #1 genetic killer of infants under the age of two! Our family was told to take her home and love her – there is no treatment or cure.
Needless to say our world came tumbling down. Our Hannah endured many treatments, machines to help her breathe, and experienced things here on earth that no child should ever experience. She was hospitalized six times in six months. Her mommy became a nurse over night and we did everything we could to make her short stay here on earth as comfortable as possible. Despite our best efforts, Our Princess unfolded her wings and went to heaven on December 19, 2009 at just 11 months old.
Hannah opened a door that we did not know existed, a doorway into a world of hurting children and families. She taught us about a disease that we had never heard of; a disease that is killing innocent babies before they are two years old with 80 percent of them passing away before their first birthday. Even though our family experienced an unspeakably painful journey, we decided that we could not ever forget what we learned, nor forget about those hurting children out there, so we formed a nonprofit foundation - HOPE for SMA. We named it HOPE for SMA because SMA Families are told over and over again – THERE IS NO HOPE! Well, we are bringing HOPE to these families by raising awareness, funding and support. My brave Jessica has been on several TV shows to tell her story; we’ve been able to get five public service announcement on the radio and several newspaper articles printed about this disease. The City of San Clemente issued two proclamations declaring August as Spinal Muscular Atrophy Month and has encouraged citizens to get educated on SMA and support research to bring this disease to an end; all because our Hannah touched planet earth.
We are the only SMA Foundation in Southern California so we have our work cut out for us. Your support will enable us to continue raising awareness of this baby killer disease and allow us to continue to support families desperate for financial assistance to purchase necessary and lifesaving equipment for their children. Families who need assistance in caring for their children including nursing support, car lifts, help paying necessary utilities since parents are unable to hold down their jobs while caring for their child.
The difference between our organization and others is that we are servicing terminally ill infants whose life expectancy is so short that they will never have a chance to sit, crawl, walk, or even swallow on their own! They have to be fed via a feeding tube, they labor just to breathe and most require 24-hour life support assistance via trachea and ventilator, or 24 hour bi-pap.
There is so much HOPE on the Horizon for these precious souls as there is a viable cure in the lab, researchers have cured laboratory animals from this horrific disease and we have just received FDA approval to proceed with human clinical trials with this very promising gene therapy program! It is very possible that SMA could be cured within the next two years!
Words cannot express the great need that these forgotten children have; nor the journey that these families are on but because we have been there – we will do whatever it takes to bring awareness to the plight of these precious ones. Please visit our website at www.hopeforsma.org for more information on our foundation and to see a three minute clip of Hannah’s Story.
Julie & Jessica Prendiz
HOPE for SMA Founders