McLane Children's Teen Advisory Board

Members of the McLane Children's Teen Advisory Board gather in a circle to show off their Children s Miracle Network bracelets.

Courtesy photo

TEMPLE — They may not be related by blood, but members of McLane Children’s Teen Advisory Board are as close as family.

These are teens that have experienced health problems that would knock many adults to their knees.

The board members are patients of Baylor Scott & White McLane Children’s Medical Center or the sibling of a patient.

Each is being or has been treated for a chronic or acute illness, be it asthma, cancer, Crohn’s disease, cystic fibrosis or any of the many chronic ailments that plague the population.

The advisory board’s goal is to provide support to the hospital and teen patients.

The teen lounge in the hospital was the idea of the advisory council.

The blanketrol

Last year, the group raised funds to purchase a blanketrol for the neonatal intensive care unit.

Blanketrol is a hypothermia system that can regulate a patient’s body temperature.

“Christian Quiles, of Killeen, a member of the advisory and a cancer patient, raised $6,000 for the blanketrol,” said Rachel Clark, Baylor Scott & White Central Texas, Foundation officer McLane Children’s. “He was honored by Children’s Miracle Network.”

Though he died in October 2016, the Advisory Council benefited from funds raised through the memorials made in honor of Quiles that went to the Extra Life Team.

Funds for the hospital

Each advisory board member is a member of the Extra Life Team, which raises money for the children’s hospital. The money is raised by individuals who pledge to play games — video, board and role playing — for 24 hours.

The McLane team has a goal of $31,809 and has raised $8,390. The group will continue to raise funds until the end of the year.

“I’ve learned not to question their ability to reach the goals, because they usually figure out a way, Clark said.

Last year, the team raised more than $26,000. In addition to buying the blanketrol, they were able to purchase a vein viewer.

Goals

This year, the team wants to purchase an osmometer for the lab, a bronch telescope and mini-telescope and a defibrillator.

The group meets with hospital administrators to discuss what equipment the children’s hospital needs. They then decide what items they will try to purchase.

If the team manages to exceed its goal by at least $15,000, they also will purchase a ECMO Heat Pump.

While the Extra Life fundraiser is geared toward gamers, the local group hasn’t embraced that aspect for their efforts.

“They hold bake sales or team up with restaurants,” she said “Some have competitions in their family.”

The advisory board members are an interesting group to be around, Clark said.

“The topics they discuss, such a life and death, aren’t usually the subjects the average teen will talk about,” she said.

Also, when away from home, most teens will push their bedtime to as late as possible, Clark said. This group heads to bed at 8 p.m.

“At first it’s a puzzle; then you realize they’re attached to machinery that’s going off all during the night and they have medications that are administered at a certain times of the evening,” she said.

Ileana Ramirez, a teen advisory board member, is a student at Belton New Tech High School @ Waskow.

Being sick and in the hospital is hard, Ileana said. Having a group of friends who have experienced more than a few hospital stays and are working together to make life better for other patients is inspiring.

“I had to be a part of it,” she said.

Ileana is talking to fellow students and her teachers about the fundraiser and asking for donations.

“Everyone in my family has donated a little,” she said. “We go to everything that is McLane Children’s-related.”

During the Thanksgiving holiday, Ileana and her family planned to be involved in other volunteer efforts — preparing meals to go to Puerto Rico, volunteering at an animal shelter and serving.

“I want people to know how amazing this group of teens is,” Ileana said.

As active and selfless as these youngsters are, it’s easy to forget they are sick until something happens, Clark said.

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