Alex Leyva, 16, was diagnosed with Duchenne muscular dystrophy at the age of five. Alex’s diagnosis quite literally turned the Perez family’s world upside down. Living in Cuba, his family didn’t have the resources needed to care for Alex, so they picked up their things and emigrated to Miami, Florida.
Soon after at the age of seven, Alex lost mobility and began needing assistance in all daily activities. Getting to and from doctor appointments was an especially difficult process as his family was forced to pay for public transportation which often would take three hours to get to the clinic where Alex sees his doctors.
“Because of our transportation situation, not only was getting to the clinic hard, but Alex was missing out on some of his favorite activities like going to the movies and spending time with friends,” said Alex’s mom, Lidys.
Enter Jett Giving Fund. Jett Giving Fund is Jett Foundation’s matching gift program that helps families across the country impacted by Duchenne in the purchase of accessible and vital equipment, like accessible vans. Health insurance often won’t cover all specialized medical and accessibility equipment such as scooters, shower chairs, ramps, rotational medical beds, platform lifts, and handicap accessible vans; items needed when suffering from a progressive muscle-wasting disorder. Jett Giving Fund helps to bring these expensive pieces of equipment within financial reach for families impacted by Duchenne muscular dystrophy across the United States.
The Perez Family was plugging away at fundraising for their half of the van’s total cost of about $39,000 when something incredible happened.
A family friend, 7-year-old Sophie, took to instagram sharing a heartfelt message imploring her followers to support her friend Alex. From that, someone Sophie knew who worked for UniVista TV station and helped to share the Perez Family’s story on a segment of the El Show de Carlucho.
While the show’s host, Carlucho, began telling the Perez Family’s story live on the show (check out some of the segment here), well-known Cuban reggaeton artist, Don Cuba–who had been interviewed earlier on the show–heard their story from off set and was moved to write a check on the spot for the remaining total of the family’s goal.
Don Cuba and Lily from El Show de Carlucho joined the family and Jett Foundation at MobilityWorks in Miami to celebrate the momentous occasion of receiving their new accessible van on February 22, 2020.
“Today’s word is thank you,” Alex’s mom Lidys said after the celebration. “Just thank you and simply thank you. To each and every person who made it possible for our Alex to have safe transportation today, thank you. Miracles do exist, good people do exist.”
Started in 2017, Jett Giving Fund has helped transform the lives of countless families across the country with over $1 million worth of accessible equipment thanks to the generous support of individual donors and major sponsors including Cure Dale’s Duchenne and Sarepta Therapeutics.
To learn more about Jett Giving Fund or to help us help more families like the Perez Family, please visit: www.jettfoundation.org/jett-giving-fund.
