‘I’m tired of being sick.' Las Cruces schools rally around teen in need of transplants

Karina Cano Perez is an 18-year-old high school senior who attends Organ Mountain High. She is a student and cheerleader and will soon be a candidate for a liver and kidney transplant in 2024.

Cano Perez was born in Las Cruces and has been sick her whole life. Her mother, Carla Cano, said the family finally received answers when her daughter was about 11 and diagnosed with Alström syndrome.

Las Cruces teen diagnosed with rare genetic disorder

“For us, (the diagnosis) meant answers because she was sick her whole life and we never knew why,” Cano said. “Some of the doctors blamed me of making her sick but it was because they couldn't find out what was the cause. They thought it was me making her sick … so when we finally (found) out that it was this syndrome, everything makes sense and everything connects.”

Alström syndrome is a very rare “autosomal recessive genetic disorder,” according to the National Institutes of Health. The syndrome is a result of mutations in the ALMS1 gene. Onset and severity of symptoms varies from person to person, but overall, symptoms include loss of vision and hearing, development of Type 2 diabetes, increased risk of heart diseases, cardiomyopathy and dysfunction of the lungs, liver and kidneys.

Intellectual function is the physical area that is largely unaffected by the genetic disorder.

According to the National Organization for Rare Disorders, only about 1,200 cases of Alström syndrome have been identified worldwide. However, cases are likely to go unrecognized, misdiagnosed and underdiagnosed. The organization estimates cases actually range from one in 10,000 people to less than one in one million people.

Living with Alström syndrome

Cano explained that her daughter started losing her hearing when she was 5 and it gradually worsened. Cano Perez received a cochlear implant about a year and a half ago to help with auditory function.

She also wore glasses starting when she was only a few months old until about age 14, when she said they did not help her to see anymore.

“Her prescription was changing every year until she … couldn’t see anything anymore,” Cano said.

After receiving the diagnosis of Alström syndrome, Cano set to work learning all she could about her daughter’s condition and what they could expect as Cano Perez got older.

In anticipation of blindness, Cano Perez learned to read Braille – though she doesn’t like it. She also speaks both English and Spanish.

“Now we are doing everything with time, not an emergency because I was able to find the experts to help us,” Cano said.

The mother and daughter travel often to Houston where Cano Perez’s team of doctors treat her symptoms and monitor her health.

Cano said her daughter’s lungs and heart are functioning well so far, but her liver and kidneys need to be addressed.

Meanwhile, Cano Perez goes to school as often as she can. She gets sick easily and misses a lot of class, but said she enjoys challenges.

“I hate what’s easy. I hate everything that’s easy,” Cano Perez said.

She started cheerleading in middle school and has continued through to her senior year. She added that because she misses so much school, she is an average student. Because she hates to be called that she spends much of her time at home studying.

In early 2024, Cano Perez will undergo surgery to remove a tumor on her right kidney. Six weeks of recovery will follow, after which she will become eligible for a liver and kidney transplant. Her name will be added to the transplant list and then the wait begins to find a match.

Cano said she and Cano Perez will have to be ready to travel back to Houston at a moment’s notice when they are notified of a match. But there is no timeline for when this may happen.

Cano Perez’s level of organ failure is at a stage four out of five – Cano explained that level five kidney failure will require regular dialysis.

COTA for Karina

Recently, Cano found out about the Children's Organ Transplant Association which helps raise money for expenses related to Cano Perez’s treatment outside of medical bills.

COTA is a national nonprofit organization founded in 1986 with the goal of helping “children and young adults needing a life-saving organ, bone marrow or stem cell transplant,” as well as people of any age with “a single-gene disorder, such as Polycystic Kidney Disease, Cystic Fibrosis or Sickle Cell Disease.”

Funds raised through COTA campaigns are given to families to help with travel and lodging expenses, prescription medications and living donor costs.

Sharon Thummel, Cano Perez’s former teacher of the visually impaired, started the COTA for Karina campaign in August. The organizing team of about six people is made up of other service providers and teachers of Cano Perez’s, with the support of OMHS and the Las Cruces Public Schools District.

The campaign has raised over $11,000 toward the $50,000 goal as of Dec. 20, 2023.

Laura Rachal, one of the organizers and Cano Perez’s orientation and mobility specialist at school, said the team’s goal is to raise as much money as possible toward the goal before Cano Perez graduates.

“If we all give a little, we can raise a lot. If 3,000 people give $15, that is $45,000,” organizers said in a text.

Rachal explained that there is no deadline to reach the $50,000 goal, but once it is reached, Cano Perez receives a lifetime grant. This will allow her to ask for as much money as she needs from COTA to receive medical treatments.

COTA for Karina has hosted raffles, auctions and many other fundraisers in the past few months. They will soon have T-shirts for sale as well.

“Karina is a very resilient young woman and she's dealt with a lot of challenges throughout her life, and she always has a great attitude, and she's always very fashionable, and she loves people,” Rachal said. “She brings people together. I mean, the six of us that are part of this volunteer group, we’re all very different. We're all different walks of life and different ages and everything, but we all come together for Karina. So she's a unifier.”

Cano praised COTA, the local volunteers and the support the national organization gives to families, allowing them to solely focus on caring for their children.

“We have a good family so we are really close. And my husband and my other two sons, they are really supportive of everything so I don't have to worry about anything else, just going with Karina and doing all the medical,” Cano said. “It's been a really good experience because we are able to find a lot of good people around us.”

With the whole school supporting her, Cano Perez said she is much less lonely these days. Kids and teachers come up to her now that her medical condition and journey is well known. She said it feels “como mi casa,” like home.

Cano said her daughter is not scared of what lies ahead.

“I’m just ready. I’m tired of being sick,” Cano Perez said.

People can donate to the COTA for Karina campaign online at cota.org/cotaforkarina. People can also stay up to date with Cano Perez’s journey and upcoming fundraising opportunities on Facebook under COTA for Karina Cano.

Leah Romero is the trending reporter at the Las Cruces Sun-News and can be reached at 575-418-3442, LRomero@lcsun-news.com or @rromero_leah on X, formerly Twitter.

This article originally appeared on Las Cruces Sun-News: Las Cruces schools support teen in need of transplants