August is National Spinal Muscular Atrophy (SMA) month.
This month is always very special to our CEO, Nieves Gomez, and his wife, Valerie Gomez. On August 31, 2012, their son, Liam Taylor Gomez, was born but was later diagnosed with SMA and lived until March 9, 2013.
SMA is the most common cause of infant death. SMA Types I, II, and III belong to a group of hereditary diseases that cause weakness and deterioration of the voluntary muscles in the arms and legs of infants and children. The disorders are caused by an abnormal or missing gene known as the survival motor neuron gene I (SMNI), which is responsible for the production of a protein essential to motor neurons. Without this protein, lower motor neurons in the spinal cord degenerate and die.
In order for a child to be affected by SMA, both parents usually are carriers of the abnormal gene and pass this gene on to their child. When both parents are carriers, the possibility of a child inheriting the disorder is 1 in 4, or 25%, with each pregnancy.
A letter from the CEO:
I remember receiving a wagon filled with toys specifically for children with Liam’s condition from the SMA foundation. This made my wife and I feel like someone cared about our situation and Liam’s unique challenges. We wanted to do the same for families in our community. The proceeds of the Color Run help us select families that we can support through their unique challenges,” said Nieves Gomez, CEO.
Every year, our goal is to raise $50,000 to share back with selected families and to donate to our local communities’ parks and recs department so they can add park attractions sensitive to kids of special needs.
We also hope that this event brings our communities together to inspire families working with children with complex medical needs to keep trying to make the best of their situation and take advantage of the time they have with their children. These families are superheroes for what they are working with and through. I know firsthand what it is to be a healthcare provider 24/7, focusing 100% of your time on the health of a child. These parents and siblings should be recognized for their resiliency.
If you are someone who has a child with complex needs, you are not alone. Seek resources to help make the best of the unique challenge you are working with. Life is what we make of it. If you have an opportunity to live, live to the fullest, making the best out of the situation to inspire others to do the same.
Although my wife and I started this project in memory of our son, Liam Taylor Gomez, the Color Run is a celebration for all families to come together to support childhood wellness and encourage families dealing with some unique challenges to never give up hope.
CBHA’s 5K Color Run is an excellent way to create awareness of these rare conditions. It’s such a fun way to interact with the community, show our support to other families, and listen to their stories.
We hope to see you at this year’s Color Run, and show your support towards SMA. Sign up for the run now!