The Bautista Family lives in Compton, California, and is navigating a life with a Duchenne muscular dystrophy diagnosis. Ellis Bautista (15) was diagnosed with Duchenne at just six years old, eventually losing his ability to walk and perform daily physical activities. Duchenne is a progressive neuromuscular disorder that causes a loss of motor, pulmonary, and cardiac function.
Ellis lives with his mother, Herminia, older brother, Victor, and father who all care for him full time. They applied to the Jett Giving Fund after years of unsafe travel conditions and the inability to give Ellis proper care.
When leaving the home for medical appointments, school, or errands, the Bautista Family relied on unpredictable public transportation. Ellis was often late to appointments, felt unsafe, and developed a sensitivity to things in public that were not fully accessible. The burden of needing to lift Ellis in and out of the home placed strain on his and his family members’ bodies.
“Our greatest hurdle is Ellis’ rapidly deteriorating health,” shares his mother, Herminia. “When we relied on public transportation, we would often wait hours for a ride or not get picked up at all.”
Sunday, March 3, 2024, brought the Bautista Family safety, accessibility, and comfort of daily transportation. At a local park, Ellis, Herminia, and Victor celebrated the delivery of their new van with family members.
The Bautista Family worked hard through food drives and community events to raise half the funds needed for their vehicle. Jett Foundation then connected the family to Walking Strong, an organization providing support to Duchenne families, who helped the family meet their fundraising goal. “Helping families is the core of Walking Strong’s mission,” shares Valerie Pappas Llauro, co-founder. “We are thrilled to be able to give the Bautista Family joy and freedom while partnering with a wonderful organization like Jett Foundation.”
Herminia says, “Now that we have accessible transportation, we are looking forward to bringing Ellis to see a snowy area. We will also not have to leave the house hours early to attend appointments anymore. Thank you to everyone who helped us with this extremely difficult life experience.”
For other families facing challenges due to a Duchenne diagnosis or searching for accessible transportation, the family suggests thinking outside of the box and utilizing the community around you for support.
Established in 2017, Jett Giving Fund has helped transform the lives of countless families across the country with over $3.5 million worth of accessible equipment and emergency assistance thanks to the generous support of individual donors, local communities, and major sponsors including Cure Dale’s Duchenne, Finn’s Friends, the Flatley Foundation, the Killian Family, Catalyst Pharmaceuticals, Kindness Over Muscular Dystrophy, Michael’s Cause, Ryan’s Quest, Sarepta Therapeutics, and Ultragenyx.
You can help us to support more families through the three branches of Jett Giving Fund: the Accessible Vehicle Fund, Emergency Fund, and Equipment Assistance Fund. Donate today or learn more about becoming a sponsor by emailing info@jettfoundation.org.
If you or someone you know is in need of support or would like more information on our Jett Giving Fund, please visit www.jettfoundation.org/giving-fund.
