Family gives back to ‘angels’ who helped son fight rare disease

Nearly 100 people braved the cool temperatures and driving mist to come out to the ‘Alex Gives Back Day’ in Luling to listen to music, play in a bounce house and eat jambalaya.

The event was a way for Alex Oxford’s family to give back to the community after people across the parish came together to help their son fight a degenerative brain disease.

After more than a year of treatment for ADHD, doctors discovered that 9-year-old Alex Oxford had been misdiagnosed and really had adrenoleukodystrophy (ALD), a brain disease that affects one in 17,000 male children between the ages of 4 and 10.

At first Alex’s parents, Carissa and Gene Oxford, were at a loss for what to do, but soon the community pitched in to help. Family members and friends set up Alex’s Angels, an organization to help raise funds for Alex’s treatment.

The disease, which is fatal and has no known cure, caused doctors to turn to experimental therapy for Alex.

“We tried radiation, but that didn’t work,” Carissa said.

Meanwhile as Alex, who was very active in sports, began to get noticeably worse, the strength of community support was constant.

“We had the Knights of Columbus hold a fundraiser, the booster club at the Mimosa Swim Club held a poker game. We had all of these people come to help when we needed it most,” Carissa said.

Students at J.B. Martin Middle School also held a fundraiser for Alex.

Although Alex has now regressed to the point where he is confined to a wheelchair and can no longer see or hear, Carissa said that an experimental treatment involving bone marrow transplants appears to have slowed the disease’s progression.

“The grafts were successful and it seems that we will have him for at least another five to 10 years,” she said. N

ow the Oxfords, along with Hahnville High School senior Brooke Fontenot, have given back to the community that has helped them so much in their time of need.

Fontenot has been working on Alex’s case for her senior project and originally approached the Oxfords about holding another benefit for Alex. Instead, Fontenot and the family decided to use the event as a way to give back to the community.

“I told her the community has already done so many things for Alex, it’s time we give back,” Carissa said.

Fontenot has a long relationship with the Oxford family and thought people should learn more about ALD and its effect on children like Alex.

Delving into Alex’s case has been a learning experience.

“I realize this family has gone through so much and they are just so strong. I’ve never seen a family so strong and so put together,” she said. “I’ve learned so much from when Alex was born and how I see him now. I looked at all of his therapy and I’ve looked through all of his documents and MRIs and everything. I just think it is amazing everything that is going on and has happened.”

The event came together within two weeks and numerous community members donated their time and resources to make the day a success.

“What we did was make flyers and let everybody know,” Fontenot said. “Everybody basically donated their time to come here and do this. I couldn’t be thankful enough for that. This is the most amazing thing ever.”

Volunteers included local band Faith in the Music, a DJ, jambalaya and pastalaya cooks, a bounce house, kids games and local dirt track racer Mickey Trosclair, whose race car has an Alex’s Angels emblem. Trosclair also donates a portion of his race prizes to the organization.

“It’s great. I don’t know most of these people who have come out to help, so it is fantastic,” Carissa said.

All proceeds from the event were donated to the St. Charles Parish Animal Shelter. In addition, the event served as a food drop for the United Way’s Thanksgiving food drive.

Carissa said it was a pleasure for her family to be able to repay some of the kindness they have experienced while dealing with Alex’s illness.

“We want to keep the money here in the parish,” she said. “It is this community that has been so good to us so it is this community that we want to give back to.”

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