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Luciano Uribe, 13, of Danbury in 2015 in a visit to Give Kids the World Village in Florida during his family's Disney World Come True trip. Standing is his aunt Stephanie Martin and kneeling is his mom Jennifer French.

Luciano Uribe of Danbury doing physical therapy at Spaulding Rehabilitation Hospital in Boston.

DANBURY — It was February when a frightened Jennifer French watched her barely 13-year-old son motionless and hooked up to tubes and pumps in the intensive care unit.

“It was terrifying not knowing if he was going to ever recover from that,” she recalled. “We are grateful he did.”

After months in a rehabilitation hospital, Luciano “Lu” Uribe is finally back home in Danbury and learning to walk again following a cancer diagnosis and being in a coma for a week.

“When I am asked how I’ve been able to stay strong though all of this, being strong wasn’t really my choice,” Luciano said. “I had to be strong because I had no other choice. I’m getting better.”

He was born with a rare genetic disease called adrenoleukodystrophy. While he underwent treatment for the disease in 2014, he was diagnosed in 2021 with a second cancer, myelodysplastic syndrome, a cancer that can become acute myeloid leukemia.

Luciano’s aunt, Stephanie Martin, said Luciano is a kind and caring jokester who loves to make people laugh. For fun, he loves to play video games like Roblox and Minecraft. He loves animals and has several pets — a snake, two gerbils, a cat, and an axolotl, a salamander he received as a gift from his aunt for working hard in therapy.

Martin has set up a GoFundMe page for Luciano to help with the medical expenses the family has faced since he was admitted to the hospital in February.

“My sister is the strongest person I know, and when I saw she needed financial help, I knew I had to do what I could to help,” said Martin, who works as the bookkeeper for Saint Gregory the Great Church and for Western Connecticut Home Care in Medical Records. “People have been donating and have been so kind and generous, beyond kind and generous.

The goal is to raise $20,000, with almost $5,000 raised so far.

Martin said this would “help make up for the work Jenn missed taking care of Luciano in the hospital for over seven months. And there are all the surprise expenses like $20 for socks, new AFOs (ankle foot orthosis), updating the bathroom with safety bars and other items that go along with that.”

In the future Martin would like to organize a blood and platelet drive and have an event to get more people to register to be bone marrow donors.

The genetic condition that Luciano was born with damages the myelin sheath of the brain, which can lead to a vegetative state and then death.

French knew she carried the gene for adrenoleukodystrophy when Luciano was born. By the time the testing was done, he was about 18 months old. French said she was upset and terrified when she got the results.

She was also ready to be proactive in setting up all the different doctors’ appointments to get him medical help to monitor the disease.

In 2014, Luciano underwent a life-saving treatment that involved gene therapy and a stem cell transplant.

“We got into the gene therapy study in Boston, and I was happy that we were able to participate in the study for multiple reasons,” French said. “One, so he could get treatment with less side effects than a standard bone marrow transplant, and two, because the study would help other boys with the same illness.”

He 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,” Martin said. “It is such a miracle and a blessing.”

Luciano’s medical journey didn’t end there.

In November 2021, Luciano’s mom could tell something was not right, and blood tests came back with low hemoglobin and platelets. A bone marrow biopsy confirmed the family’s worst fears. It was myelodysplastic syndromes, a condition that occurs when blood-forming cells in the bone marrow become abnormal, according to the American Cancer Society, which says that one in three patients with MDS can develop acute myeloid leukemia.

Luciano was admitted to Connecticut Children’s Medical Center for chemotherapy. He was then admitted to Boston Children’s Hospital for radiation and a bone marrow transplant on Feb. 15 five days after his 13th birthday.

French, a single mom, said the scariest time of Luciano’s entire medical ordeal was his trip to the intensive care unit on Feb. 20.

“He had two different types of bacteria that grew into his central line, he went septic, and he had to go to the ICU,” said French, who works at Student Transportation of America as a special needs bus driver for Danbury schools. “It was scary, day in and day out for a week, watching him motionless with all sorts of tubes and pumps, all sorts of medicines.

“For eight or nine hours I couldn’t see him in the ICU because they were trying to work on him and get him stable.”

After coming out of the coma, the recovery process has been slow.

Luciano needs substantial physical therapy to learn to walk again. At the end of March, he and his mom began living at Spaulding Rehabilitation Hospital in Boston while Luciano underwent physical therapy.

Luciano said his mom’s help and her love has meant a lot.

“I’m happy she was there every day with me because some of the kids at the hospital had no parents there,” Luciano said. “I am doing better because of her. My mom makes me do my therapies every day, and that makes me a little mad, but I know I am getting better because of it.

“My mom is support for me.”

Luciano slowly became stronger, and on July 15 was strong enough to be able to go home.

“I do a lot of therapy and it is easier to walk than when I first tried,” he said. “The support and love from my family has been a big help. My aunt Stephanie promised me a pet axolotl if I worked hard in therapy, and I got my pet axolotl.”

Too sick to keep up with school in the hospital, Luciano is in the eighth grade at Broadview Middle School and is looking forward to being well enough to attend school in person again. In the meantime, he will attend school through the homebound program starting this fall until he is able to get vaccinations.

“After a bone marrow transplant, you lose your immunity from the diseases you were vaccinated against before the transplant,” Martin said. “You have to get the vaccines again. He will be able to be vaccinated at around a year post-transplant, sometime next February.”

Since coming home, Luciano has had a busy schedule with physical therapy, occupational therapy, speech therapy, and clinic appointments. Martin said his numbers look good, his cancer cells are all replaced with donor cells, and he is growing his own platelets and antibodies. He is walking about 30 feet at a time with a walker.

“It seems like Lu and his body were just waiting to come home to get even better, to be able to work even harder on therapies,” French said. “He is still in the slow progress of learning to walk fluently with endurance with the help of his AFO and walker. There’s always a hopeful light at the end of the tunnel.”

She said he has been able to get through it by “being loved by his family and everyone around him and being spoiled a little.”

“But I don’t know if he’ll be able to put all these medical issues behind him,” French said. “There’s a lot of traumatic medical things that happened, and I don’t know how much of it he’ll remember forever. I know for me there’s always going to be the ‘what if it happens again’ because he got cancer from the chemo that he had eight years ago. We will just have to stay vigilant and proactive. There’s no quitting.”