Most of us take our independence for granted. For the Hernandez family, independence is something that has not come as easily, but as of today that all changes. Today, the Hernandez family becomes the proud owners of a 2017 BraunAbility Dodge Caravan with an accessible ramp from United Access for their daughter Carla to be able to travel more easily to her therapy and doctor appointments.
The Hernandez family has three lovely children; one daughter out of college, one son in high school, and Carla who is turning 12 today. Carla, their youngest, is in a wheelchair. Carla is a very sweet girl who has been through many things already in her short life. After many years of exhaustive testing, Carla was diagnosed with Aicardi- Goutières Syndrome (AGS) and Cerebral Palsy.
Aicardi-Goutières syndrome is a disorder that mainly affects the brain, the immune system, and the skin. Most newborns with Aicardi-Goutières syndrome do not show any signs or symptoms of the disorder. However, about 20 percent are born with a combination of features that include an enlarged liver and spleen, elevated blood levels of liver enzymes, a shortage of blood cell fragments called platelets that are needed for normal blood clotting, and neurological abnormalities. As a result of the severe neurological problems usually associated with Aicardi-Goutières syndrome, most people with this disorder do not survive past childhood. However, some affected individuals who develop the condition later or have milder neurological problems live into adulthood.
Cerebral Palsy is a disorder of movement, muscle tone or posture that is caused by damage that occurs to the immature, developing brain, most often before birth. Living with Cerebral Palsy can make it difficult for people to move about as easily especially when it comes to getting in and out of a vehicle.
“Carla is the light of our lives. She is the reason we continue to fight every obstacle that we face. Carla has gone through so many hardships and she has beat them all,” says Mrs. Hernandez.
Carla was born perfect and healthy until she was about six months old. Carla’s doctor reported that Carla was not hitting her milestones. At nine months, Carla’s doctor ordered blood tests. The results came back irregular. It took them a while to diagnose her with mitochondrial disorder. Carla was not able to sit, roll, or even touch her feet like a normal baby. Her doctors explained that Carla needed intense therapy and care. As a result of this diagnosis, Carla’s mother decided to quit her job to become a full-time caretaker. Due to Carla’s inability to walk, she developed hip dysplasia. This meant a hip surgery was imminent. Her first hip surgery was followed by a series of surgeries due to complications. Through it all, Carla remained strong. When Carla turned five years old, her doctors agreed that Carla had been misdiagnosed. Carla was now correctly diagnosed with Aicardi-Goutierres Syndrome (AGS) and Cerebral Palsy. Currently, there is no cure for either disease. Carla continues to need around-the-clock care because she is not able to walk, talk, or play like a typical child. Even though she cannot control her body, Carla is able to express herself. She loves food, especially chocolate. She loves listening to music and gets so excited when she sees people dance. Mostly, Carla loves going out. “We purchased a Dodge Caravan last year and hoped to make it wheelchair accessible. Unfortunately, my husband lost his job due to an emergency surgery he had to have in April of 2018. My husband is now receiving unemployment benefits due to the surgery and is currently looking for a job. The money he receives barely covers our basic needs. I am the primary caretaker of Carla and I was diagnosed with severe back arthritis in 2016. Because Carla continues to grow, lifting her every day to take her to her therapy and doctor’s appointments or even on a simple car ride to the store, is becoming more challenging than ever. Her weight and the weight of her wheelchair is putting a lot of stress on our backs every day. Our van needs this expensive modification to facilitate our outings.”
“The stories we hear every day and the smiles we see on our customers faces when they drive away for the first time, fuel our passion for the work we do,” said United Access Founder, Richard May.
Thanks to United Access for providing a rental van to the family during this transition and the Steelman Family Foundation for their generous grant contribution, the Hernandez family will be driving away in their newly converted 2017 Dodge Caravan this Wednesday at the United Access store in Scottsdale [14885 N 83rd Pl., Suite 105, Scottsdale, Arizona 85260].
“We are dedicated to giving back to the community that has given so much to us,” said René Steelman, founder of the Foundation.
“This van is going to be a life changer when going places! It is so hard to get her chair in and out of our current van,” said Mrs. Hernandez. “We have been in the market for a wheelchair-accessible van to accommodate our family. Having a van that will accommodate us all will be a lifesaver.”