Casals Family

Fundraising for an Accessible Van

Meet Alex and his family! Alex’s family and closest friends call him “Ale.” His immediate family consists of his older brother – who is one year older – his mom, dad, and a new addition to the family, his puppy Rollo. “Rollo has had an unimaginable, positive- emotional effect on Ale and everyone in the house. We can’t describe Alex without mentioning his passion for basketball and his love for his cousins and the rest of his family. His enthusiasm to get together with friends and family is contagious, and he is always ready for anyone to come over,” says Lianette.

Alex was born in the United States, but his family is from Cuba. His name is of Greek origin, meaning “warrior or man’s defender.” It is a combination of the English Alexander with the Spanish Alejandro. His mom could not have picked a better name for him because Alex is a superhero in real life! Since a young age, he has faced many challenges and has overcome all of them with such a great attitude.

Alex was diagnosed with Duchenne muscular dystrophy when he was 5 years old. As his muscle weakness progressed, he had frequent falls and fractures. In elementary school, he lost the ability to run, go up the stairs, and walk long distances. He has participated in three clinical trials, combining school with physical therapies, visits to specialists, and travels out of town nearly every week to contribute toward research to find treatment for he and others like him. “It’s been exhausting sometimes, but somehow, he has the ability to flip the coin around and enjoy the little things that most of us take for granted,” says Lianette.

Alex had a very happy childhood, despite his limitations. He is a priority for his parents, as they want to keep him emotionally strong. Becoming a teenager has been more of a struggle for him than what they anticipated. It has been very hard for Alex to watch his brother and friends grow taller, more athletic, and independent, while his body sees the opposite. Alex uses a wheelchair to move around, and since he is not able to stand, he needs to be transferred to bed or any other place to sit. To slow down the muscle deterioration caused by Duchenne, Alex takes steroids as prescribed by his doctors. Unfortunately, as a side effect of this medication, Alex has gained weight and has osteoporosis. Alex needs an accessible vehicle as soon as possible for both his physical and mental health.

Alex and his family decided to apply to Jett Foundation’s Accessible Vehicle Fund in hopes of obtaining safe, reliable transportation not only for him, but for his parents. The Accessible Vehicle Fund is one of two branches of support offered through the Jett Giving Fund; Jett Foundation partners with families impacted by Duchenne to raise the necessary funds to obtain this essential and vital item.

Getting an accessible vehicle is a necessity for Alex. “Getting Alex to doctor’s appointments, desired get-togethers, social and sporting events, or anywhere necessary has become a risk,” says Lianette. “Alex has an infinite desire to make every day a new adventure.”

Help Alexandro attain freedom and independence! Please consider donating to Alexander’s Jett Giving Fund fundraiser today.

All donations are tax deductible! The family is working to raise half the funds needed for their van; when they reach their goal, Jett Foundation will cover the remaining half and coordinate purchase and delivery of the vehicle.

 

About Jett Giving Fund’s Accessible Vehicle Fund

Jett Giving Fund is Jett Foundation’s financial assistance program for families impacted by Duchenne muscular dystrophy who are in need of accessible vehicles or emergency support. As part of the Accessible Vehicle Fund, families fundraise half the funds needed or more for an accessible vehicle, and Jett Foundation covers the remaining costs once they reach their goal. 

If other resources have already been used to meet a specific need, if there is no longer a specific need, and/or if donations have been received in excess of a specific need, donations made in furtherance of a specific need will be applied for general purposes of the Jett Giving Fund. If the Jett Giving Fund no longer exists, all donations will be applied to further the general charitable mission of Jett Foundation.

How is the rare disease community accomplishing goals?

Tune in on February 29 to hear from our panel and moderators on how they are accomplishing goals and living life to the fullest!

Your gift helps Jett Foundation provide programming and opportunities, such as Camp Promise, to many families impacted by Duchenne muscular dystrophy each year.

Accessible Vehicle Fund Applications Open