Helping kids battle a rare disease - Albuquerque Journal

Helping kids battle a rare disease

Diego Garay, 9, and Annika Garay, 3, were recently diagnosed with Gaucher disease. (Courtesy of the Garay family)
Diego Garay, 9, and Annika Garay, 3, were recently diagnosed with Gaucher disease. (Courtesy of the Garay family)

Life can change in an instant.

For Eric Garay and his wife, Ana, it was two instants.

Those are the moments the Albuquerque couple found out their youngest daughter suffers from a serious rare disease, and then less than five months later that their son has the same disease.

Annika, now 3 years old, was hospitalized more than a year ago. The couple were told she was anemic and that her spleen was enlarged.

Testing began.

It took more than a year.

All tests were inconclusive.

In January 2016, the Garays’ last resort was a bone marrow biopsy, where it was revealed that Annika has Gaucher disease Type 1.

Gaucher disease is an ailment in which fatty substances accumulate in the bone marrow and certain organs, such as the liver and spleen.

According to the National Gaucher Foundation, it affects one in 20,000 births.

If not treated, it can cause intense pain and cause bones to fracture.

Although the disease is treatable, there is no cure.

Treatments for Annika Garay, left, have begun. With her are her parents, Albuquerque couple Ana and Eric Garay.(Courtesy of the Garay family)
Treatments for Annika Garay, left, have begun. With her are her parents, Albuquerque couple Ana and Eric Garay.(Courtesy of the Garay family)

“With the news, we know it’s going to impact her life from now on,” Eric Garay says. “It’s such a rare disease, and it’s hereditary. We were told to get our other two children tested.”

At the beginning of May, the Garays were thrown another curveball.

The couple were told their 9-year-old son, Diego, also had Gaucher disease. Their other daughter, Sienna, did not.

According to the National Gaucher Foundation, there have been fewer than 15 diagnoses of the disease in New Mexico – the Garays’ children are No. 13 and No. 14. Annika is the youngest of the known cases.

“This is something that has changed our lives,” he says. “We’ve been learning more about the disease and working with the National Gaucher Foundation.”

The treatments are enzyme replacement therapies, which are given intravenously.

Annika has a catheter port underneath her collarbone for her treatments, which she receives every two weeks.

“Annika has been getting treatments,” he says. “Diego got his first treatment recently.”

A reunion/benefit show with Eric Garay's band Left Unsaid was held at the Launchpad on May 20. The show was sold-out. (Courtesy of the Garay family)
A reunion/benefit show with Eric Garay’s band Left Unsaid was held at the Launchpad on May 20. The show was sold-out. (Courtesy of the Garay family)

But the Garays are not facing the battle alone.

On May 20, a sold-out crowd showed up at the Launchpad in Downtown Albuquerque for a benefit and reunion concert for the Garays featuring Garay’s old band, Left Unsaid.

The punk rock band ran from 1998 to 2006, when it developed a loyal following in Albuquerque, often playing shows at the Launchpad and the Sunshine Theater. The band hadn’t played a show in five years.

It was Launchpad owner Joe Anderson’s idea to turn the 19th anniversary of the Launchpad into a benefit show.

“Joe’s been great,” Garay says. “He paid for the other band members to fly back into Albuquerque to do this show. When we were a band, we were always supported by the local community. The show sold out in two weeks.”

Garay says the past couple of months have been filled with a roller coaster of emotions and uncertainty.

The enzyme replacement therapies are expensive, but Garay says Genzyme, the company that makes the enzyme, has given the couple assistance in paying for the treatment.

Insurance is also covering much of the cost, but the Garays still face costs for doctor visits and copays. “All of that is on us,” Garay said.

The couple has set up a crowdfunding page through Gofundme to help offset some of the costs.

The page was originally started for Annika, and in the last week, Diego was added as well.

More than 160 people have donated more than $12,500 in a month just with the Gofundme page. The page can be found at gofundme.com/annikagaray.

“The community is stepping up,” he says. “It’s humbling to see the kindness of strangers willing to help out.”

Garay says the couple are pledging 20 percent of all donations to the National Gaucher Foundation.

He and Ana are getting involved with spreading the word on Gaucher disease.

“We don’t have it, and there are probably plenty of others who have gone undiagnosed,” he says. “We don’t want anybody to go through what we have. We want to be there to help in any way we can.”

UpFront is a daily front-page news and opinion column. Journal Arts editor Adrian Gomez can be reached at agomez@abqjournal.com.

 


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