Miracle-Child Luis

Luis (Photography by Fagan Studios)

First steps. First words. First birthday. First day of school. Kids have many firsts. Very few have first…tumor.

“Doctors said I wouldn’t walk again…” said Luis. “…if I lived.”

His father, Hector, emigrated from Puerto Rico and lived in Chicago. His mother, Judy, emigrated from Puerto Rico and lived in the Bronx. Both returned to Puerto Rico in their late teens, found each another, and started a life together.

Luis was born in Puerto Rico in 1983.

Early in his life, he struggled with balance and walking. The issues concerned his mom, so he visited the hospital in Puerto Rico. Doctors diagnosed Luis with a neurological issue—his brain was not communicating with his legs. Additional inspection revealed a tumor on his neck. Doctors made an incision and did a biopsy on his tumor. Because Puerto Rico wasn’t advanced in the medical field, doctors didn’t have the equipment or expertise for treating his condition.

“Doctors said I needed help,” Luis said. “But they couldn’t help me.”

The result was an unexplainable, unimaginable story.

“My mom believes a miracle happened in the hospital in Puerto Rico,” said Luis.

Luis (Photography by Fagan Studios)

As Luis and his mom were sitting in his hospital room—discouraged and defeated—a woman walked in and said: “If you want to survive…visit Mayo Clinic in Minnesota.”

As mysteriously as she came…she was gone.

His mom researched Mayo Clinic and found one in Florida and one in Texas, but she had faith and believed it was a sign. Six months later—March 1990—Luis and his family were in Minnesota. The six-year-old was embarking on a lifelong journey.

Mayo Clinic diagnosed Luis with Neurofibromatosis—a genetic disorder affecting the nervous system. There are two types: NF1 and NF2. NF1 is the more common type and characterized by discolored skin, growths, enlargement and deformation of bones, and curvature of the spine. Tumors may also develop on the brain, cranial nerves, or spinal cord.

The question was not are there tumors…the question was how many tumors are there.

“I have tumors all over my body,” Luis said. “I have tumors in my arms, in my chest, behind my eyes, and more. Tumors attacked my neck and spine.”

Luis (Photography by Fagan Studios)

The tumor on his neck was large—it covered C1, C2, and C3 cervical vertebrae. It fused to the bone—it was holding his neck together. Doctors removed the tumor in a high-stakes surgery. Surgery was as successful as possible, but Luis needed a neck fusion and a full body halo for the next year and an additional six months in a wheelchair. Best scenario: paralyzed for life. Worst scenario: less than one year of life.

That was 30 years and 100,000,000 steps ago.

“I have had 10 total surgeries,” said Luis. “I have had tumors removed from my neck and trachea and I may need one removed from my eye. But I keep on living; keep on walking.

“I can. I will. I must.”

Doctors also said Luis would never play sports. He played basketball, football, and was a longtime boxer.

“Everything I was told I couldn’t do…I did,” Luis said.

The Ronald McDonald House of Rochester was founded as Northland Children’s Services in 1980. After operating for 10 years as Northland House, it was invited to become a licensed Ronald McDonald House in 1990…when Luis sand his family arrived in Rochester.

When Hector learned his son needed medical care in the United States, he informed his employer—a famous lawyer in Puerto Rico—he would be leaving. He connected Hector with government officials and communicated with Mayo Clinic and the House. Plans for Luis happened fast…and saved his life.

“The House was our home for a long time,” Luis said. “It’s still our home.”

Luis (Photography by Fagan Studios)

Following the first surgery, his dad returned home. After a couple months, he was back in Minnesota. Luis and his parents, sister, aunt and uncle, cousins, grandparents, and more, made Rochester their permanent home.

“Everything worked out the best for everybody,” said Luis.

Luis remembers his time in the House fondly, reminiscing about his best friend from Ukraine and his mom connecting with other moms. Visiting the recently completed expansion—which made the Ronald McDonald House of Rochester one of the largest Ronald McDonald Houses in the world—was emotional for Luis.

“The new House…” Luis said. “…it shows families—everything will be OK.”

Luis visited the House for the first time in decades when Subaru of Rochester made a donation during its Share the Love event in June 2019. Luis was a Product Specialist for Subaru of Rochester for four years and is now Special Finance Manager for Nissan of Rochester, part of the Penz Automotive Group.

“The opportunity; the door Todd opened…” said Luis. “He didn’t have to hire me; didn’t have to give me a chance. But he did. And I am forever thankful.”

Luis is making the most of his opportunities.

“I want to make a difference,” said Luis. “I want to be involved with the community. I want to help kids. I want to motivate others.”

Luis (Photography by Fagan Studios)

Subaru of Rochester selected the Ronald McDonald House of Rochester as its charity of choice for the Subaru of America Share the Love event in 2019-20, donating $250 for every new vehicle purchased and an additional $50 for the House…resulting in a $32,230.36 donation!

The commitment to the children and families at the House was simply another reason Luis is proud of his work.

“Tell children and families: everything will be OK,” Luis said. “And it will be OK because of people like Todd and companies like Subaru.”

There are more surgeries in his future, but Luis is staying optimistic.

Only one doctor from his original surgery is still practicing. When he sees Luis in the hall, he asks, “How is my miracle child?”

“My mom calls him our angel,” said Luis.

“My mom always said I should share my story,” Luis said. “But it’s not only my story. My mom, my dad, my family, the Ronald McDonald House—it’s our story.”

And what a story it is!

Luis (Photography by Fagan Studios)