A Wheelchair-Accessible SUV for Luciano

16-year-old Luciano Uribe, from Danbury, CT, has been through an unthinkable medical journey that has left him bed-bound and in a wheelchair. Getting out of the house to go to appointments, school, or do any of the activities a normal 16-year-old would like to do is nearly impossible, because his mother, Jennifer French, must physically lift him in and out of the car every time he leaves the house. Jennifer also has a hernia that needs to be repaired, making these transfers even more difficult.

We would like to help change Luciano's life by getting a modified Wheelchair SUV that we can directly wheel Luciano and his chair into. Luciano will never be able to drive due to seizures, but he is surrounded by family that love him and would take him anywhere he needs or wants to go. Having the ability to just wheel into the car instead of being bodily transferred will be a tremendous positive change in Luciano's life, restoring his independence. It may even help him to walk again by making going to physical therapy appointments a possibility.

LUCIANO'S MEDICAL JOURNEY

Luciano was born with a rare genetic disease called adrenoleukodystrophy, or ALD. ALD damages the myelin sheath of the brain, leading to a vegetative state and then death in young boys. In 2014, he underwent a life-saving treatment for his ALD; he had gene therapy and a stem cell transplant and was in the hospital for months recovering at Boston Children’s Hospital. He still has adrenal insufficiency and seizures, but he won’t die from adrenoleukodystrophy- such a miracle and a blessing!

To our horror, Luciano was diagnosed with Myelodysplastic Syndrome, or MDS, in November of 2021. MDS is the cancer that goes on to become Acute Myeloid Leukemia. He was admitted to Connecticut Children's Hospital for chemotherapy, and then to Boston Children's for radiation and a bone marrow transplant. After the transplant, he had complications from his central line and blood clots in his neck. He barely survived. He went septic and was placed in a medically-induced coma for a week.

When Luciano came out of the coma, he was weak and de-conditioned. He spent months at Spaulding Rehabilitation, learning to walk again. Finally, he was discharged and got to go home, where he worked hard at walking during in-home physical therapy.

Unfortunately, that is when he developed Graft vs. Host disease. Graft vs. Host is when the donated immune cells attack the transplant recipient's body's own cells because they see them as foreign. Luciano became very sick again, and again became deconditioned and unable to walk.

That leaves us where we are today: Luciano will need surgery to fix a dropped foot and significant physical therapy before he is ever able to walk again. I can't even imagine how discouraging it is for him; he fought for his LIFE to learn how to walk again and then lost it all because he became sick again. It is a testament to how resilient and amazing Luciano is that he wakes up every day and tries, tries, tries!

THE WHEELCHAIR ACCESSIBLE SUV

We are looking to buy a rear-entry wheelchair accessible SUV, such as a Kia Soul. This will allow us to simply wheel Luciano up a small ramp and into the car instead of Jennifer hurting herself lifting him every time Luciano needs to leave the house for an appointment. This also opens up the world to Lu- he is unable to leave the house whenever he wants now because of the transfer problem. With our wheelchair accessible car, this problem will completely vanish!

Thank you so much for your time reading this and your generosity donating. Thank you for changing Luciano's life.