Patient Stories

Patients are the lifeblood and purpose of our foundation. Their amazing stories enrich our lives and touch our hearts. View our featured patient story below or view our donor stories.

Featured Story: Elias Mirabal, artist

When Elias Mirabal brought his portfolio to the Carrie Tingley Hospital Foundation, it was not his first time showing his artwork.

At 15, Elias has talent, and his mother knew it since he was 6. A self-taught artist, Elias works in pen and ink, pencil, and, occasionally, pastels. Elias was born with congenital scoliosis. As an infant, Elias underwent multiple hand surgeries to remove a duplicate thumb. Then, in fifth grade, he was hospitalized again, for another surgery, and had to wear a brace for a year. He goes to Carrie Tingley Hospital now every 2 years for an x-ray on his back and his hand and on-going care.

When asked what inspires his art, Elias, a typical teenager, replies: “Superheroes, of course. And, music … and anything retro.” He continues: “I like to see kids from the Hospital do something creative with their disabilities, like I have … You have to work for it. If you believe in something hard enough, you can achieve it.”

In between schoolwork, voice lessons and working on his latest drawing at the kitchen table, Elias spends time with his close-knit family.

Elias’ dream is to be famous for his artwork—part of a creative family, he also composes music and writes poetry. A native New Mexican, Elias plans to attend college to study art, and, “someday, buy a mansion in Rio Rancho.”

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Featured Story: Daniel, 14 and Mom, Sarah

A huge fan of Nascar, Daniel knows all the drivers and their vital stats.  He can recite the drivers’ names, the teams they race for, and their sponsors.  And, during the season, he never misses a race.

Daniel has Lowe Syndrome, a rare genetic condition that affects the eyes, the brain, and the kidneys.  His mom, Sarah, shares that it’s also called the oculo-cerebro-renal syndrome.  Women can be carriers, she says, but the disease only affects men and boys.  It’s so rare that it’s estimated in the U.S. there are only 200 boys with the syndrome. 

Born legally blind, Daniel underwent surgeries at 3 months to gain his sight.  He didn’t start talking until he was 4 years old.  “He’s not autistic,” Sarah says, “but he has some similar behaviors.”  Part of the medical condition is that Daniel has chronic kidney stones and also experiences seizures.  “The behaviors can be hard,” she continues, “but the kidney stones are the biggest complication.”

Daniel is 14 years old, but developmentally, he’s 6. 

In 2008, Daniel was the recipient of a Make-a-Wish Foundation grant, and they remade his bedroom in a Nascar theme. In addition to Nascar, Daniel loves to play in the backyard with his puppy.  He goes to Middle School full-time and just started riding the bus.  But his favorite place to visit is the airport.  “I like to watch the airplanes, and I like to check the time,” he says.  Because of his love of numbers and math, reviewing the departures and arrivals screens is a real highlight in his month.

Daniel has a series of doctors as well as physical and behavioral therapists.  The family has been going to Carrie Tingley Hospital since he was 3.  “We call it the fun hospital,” says Sarah.  “When he was learning to walk, he practiced in the hallways at Carrie Tingley.”

Learning about Lowe Syndrome and gaining awareness has been critical to the family.  When they learned of a national conference, with specialists and support networks for families,  Sarah worked with the Hospital’s Social Worker and applied to the Carrie Tingley Hospital Foundation for financial assistance to attend and received funding.

 “Going to the conference changed our lives,” says Sarah.  “We learned the things we needed to know.  We met other families and didn’t feel so isolated.  Learning about the condition made me not so afraid to talk about his body and what’s going on … now we know what to watch for.”

When asked about the future, Sarah is honest.  “To look to the future is scary.  I’m looking forward to him growing up.  I’m looking forward to being able to do more with Daniel.  I do know we have the best care from his doctors.  I’m looking forward to attending more conferences.  There’s so much more to learn. ”

Daniel is very time-oriented.  Structure is very important to his day.  He recently bought his own clock that he likes to show off.  Nascar, of course.

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