LAS CRUCES – A Las Cruces teenager who received a liver transplant when she was nine months old, along with a group of other teenage organ transplant recipients from across the nation, has started a support group for children and teens like her.

“I had a condition called biliary atresia,” said Sienna Torrez, 17, a student at Arrowhead Park Early College High School.

After her transplant, Sienna said her parents met another family who had a baby with the same condition and became friends. Last year, Sienna and her friend went to a camp called St. Dorothy’s Rest, for youth transplant recipients in California.

“That’s where we met everyone else who’s a part of this organization now,” she said.

The online support group is available for youth ages 0-18 who are either awaiting a transplant or have already received one.

Overcoming her scar 

Because she was a baby when she received her transplant, Sienna said she didn’t understand how traumatic of an experience that was for her family, but as she grew up she began to realize that she was different from other children her age.

“I was always the one going to doctors all of the time and my friends weren’t and I always took medication and I thought that’s what everyone did and I realized that was actually not what everyone did,” she said.

One of the biggest obstacles Sienna said she had to overcome was becoming confident about her transplant scar, because it isn’t normal to see people with scars at such a young age.

At 17, Sienna said she has never been to a public swimming pool with friends because she has never felt comfortable in her own skin with her scar.

“It took me to just this year that I barely started getting comfortable with it. It’s just about confidence and learning to be comfortable within yourself. I hope to use my experience to help other kids, too, because I know it’s a big issue that nearly all transplant recipients do face,” she said.

Going to the camp was one of the biggest catalysts for her in gaining the confidence she needed to face this challenge.

“Learning that I’m not the only one with one, but my scar isn’t as big or as deep as the other ones that I have seen. It made me realize that everyone is different. Everyone should be able to love themselves, no matter what,” she said.

Life as a transplant recipient

For the first five to 10 years after receiving an organ transplant, Sienna said life is more drastically different, but now that she’s older she doesn’t feel that much different than other teenagers her age.

“But I have been lucky,” Sienna said. “I know people who have not been as lucky. I know a girl who is my age and she still has to go to the hospital and she still has to do tests and they still worry if she’s OK.”

Many times in these situations, parents are scared too —ut Sienna said that things do tend to get better.

Soon to graduate from high school, Sienna plans on eventually going to medical school.

“My experience really helped shape me to really want to become a doctor, from the time I was very little,” she said.

Common ground

For the zero-to-5 age group, the teens plan to focus on the parents of these children, because they realized that their parents had to learn about the conditions and what comes along with transplant surgery.

For children in the 6-12 age group, the teens will focus on teaching them about what a transplant is and helping them to feel comfortable in their own skin.

“And teaching them, really, why they have to take medication, why are they a little bit different, why they have to go to the hospital sometimes — especially if they’re about to have a transplant. I know there’ve been kids who have had nightmares about it, either pre- or post-(surgery), and we really just want to be there for them to help them along their journey,” she said.

The 13-14 age group will be a support, advocacy and awareness group that will focus on raising awareness for organ donation.

“I think it’s really important because, though 90 percent of Americans are in agreement with organ donation, only 60 percent of them actually sign up to be organ donors. That 60 percent is great, but it can be even better and save even more lives,” she said

Organ donation gives sick children an opportunity to live and an opportunity to know what it’s like not to be sick.

They plan on accomplishing their goals by hosting Zoom meetings, since it’s a nationwide support group. With the little kids, Sienna said they plan on making things really fun for them while explaining the journey to them at the same time.

A nationwide network of support

Other members of the group include Khlieghya Dandie-Evans, who received a liver transplant when she was 5 months old. Since she was 5 years old, Khlieghya has been an advocate and face of the transplant community.

Grace Garcia received a liver transplant when she was 8 months old.

Others are reading:

Turner Hill, who is now 18, received a kidney his first transplant when he was 2-and-a-half years old. Sienna said that, since then, he has received multiple kidney transplants.

Brandy Carew received a kidney transplant when she was 8 years old. She is now 17.

Ashley Andrade received a kidney transplant when she was 15.

For more information about the Youth Transplant Recipients support group, visit their website at https://youthtransplantrecipients.weebly.com/.

Bethany Freudenthal can be reached at [email protected], 575-541-5449 or @bethanyfreuden1 on Twitter. 

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