Aliyah’s story: Choosing joy through every challenge

It was June 15th and the family was watching a boxing match when they got the call: “We’ve got a donor kidney for Aliyah. Can you get here in 20 minutes?”

“We all got up and started screaming and celebrating,” says Aliyah. “And then we started scattering around the house, hurrying up to pack.”

Within minutes, they were rushing to the hospital. The next morning, Aliyah received the kidney transplant she'd been waiting for.

"When I woke up from the transplant surgery and saw my mom, I just started crying," Aliyah says.

At 17, Aliyah is no stranger to tears – and experiencing life fully – no matter what it brings.

More than just the flu

The summer before her freshman year, Aliyah was playing softball when she suddenly collapsed.

For weeks, Aliyah had been unusually tired and thirsty. Her family initially attributed it to summer, teenage sleep habits or a possible virus.

But even with lots of extra fluids, rest and TLC from her aunt, Aliyah did not get better.

“Then, when I started vomiting something dark, it was clear it was time to go to the hospital,” says Aliyah.

At the Emergency Room at Children’s Health℠, doctors ran tests and discovered that Aliyah had advanced kidney disease and was in kidney failure. “Progressive kidney disease can happen slowly – and is often quite silent – until the kidneys are really affected,” says Elizabeth Brown, M.D., Interim Chief of Pediatric Nephrology at Children’s Health and Assistant Professor at UT Southwestern.

Aliyah was diagnosed with glomerulonephritis and C3 glomerulopathy (C3G). These conditions had caused severe, irreversible scarring on her kidneys, making it difficult for them to function. Aliyah needed immediate dialysis to take over the work of her failing kidneys – and to be put on the list for a kidney transplant.

Support through the hard times

Aliyah’s dialysis treatments were 3 days a week for 4 hours at a time.

Her twin sister, Aniya, along with their other sisters, her grandma and her mom, helped Aliyah through the demanding dialysis schedule.

“My mom and granny are so supportive. And Aniya has always got my back and is by my side. Aniya’s my best friend for real,” Aliyah says.

Aliyah and her mom also found support in the nurses and Meagen Dodge, transplant social worker at Children’s Health.

Krystyn is grateful for how Dodge helped Aliyah keep up with school and get her the school supplies she needed.

Facing complications head on

Aliyah's transplant was a success, but the first year post-transplant was anything but easy and required several more hospital stays.

She developed BK virus – a common infection that can affect people with kidney transplants because the medications that protect the new kidney also weaken the immune system.

“BK virus is one of the unfortunate complications from the immunosuppression medications required to prevent kidney rejection,” says Dr. Brown.

Aliyah also developed an antibody-mediated rejection (AMR) – due to the adjustments the team needed to make to her medications to treat the BK virus. This series of complications meant Aliyah needed a catheter in her neck so she could receive plasmapheresis (a procedure to remove the antibodies causing rejection) and monthly IV infusions.

“Thankfully, our team caught everything very early and was able to provide very prompt treatment,” says Dr. Brown. “And Aliyah’s follow-up biopsies have shown that she does not have any scarring in her new kidney.”

Throughout her many treatments and hospitalizations, Aliyah continued to lean on support from her family and care team – and focusing on what she could do instead of what she couldn’t.

Tapping into her creativity

Both pre- and post-transplant, Aliyah spent countless hours in the hospital, but the child life specialists and nurses were always there to help.

“I’d tell them, ‘I’m bored. Can you bring me something I can do?’ and they’d bring me stuff to make slime or to paint,” says Aliyah. “It helped pass the time – and it was more fun than scrolling on my phone.”

Over time, these activities sparked a new creative side in Aliyah. She started doing nails for her granny, with elaborate designs and charms.

And the night before homecoming, Aliyah and her twin sister stayed up until 6 a.m. sewing rhinestones on their jeans for their first homecoming football game.

Living in the moment and finding normalcy

After transplant, when contact sports such as softball were no longer considered safe, Dr. Brown helped Aliyah find new ways to stay active. Color guard brought together several things she loved: music, dance, performance and sports.

“Aniya and I do color guard together,” says Aliyah. "We want to do things together because we don't know if we'll end up at the same college. We're just trying to live in the moment before we leave."

Dr. Brown has also helped Aliyah navigate milestones that matter to her. She also quickly adjusted her medications when one of them caused severe itching.

Connection, memories and discovering her purpose

For Aliyah, being able to attend specialized camps like Camp Reynal and Camp Soar (Some Organ Assembly Required) for kids who’ve faced dialysis and transplant has brought invaluable connection, memories – and a greater purpose.

One year, just for fun, she helped organize a TikTok dance with campers and counselors.

"I’ve been to camp for a few years, sometimes with Aniya. I always love it because it’s the one place where we all belong," Aliyah says. "Kids can show each other our scars or G-tubes and connect in lots of ways, some of which are unspoken.”

Dodge, who co-directs Camp Soar, has watched Aliyah become one of the first kids to speak up during group sessions.

Before camp, becoming a nurse had never crossed Aliyah’s mind. But after seeing young campers navigate dialysis and transplants, she’s felt called to become a camp counselor – and a pediatric nurse.

Preparing for her future and advice to others

Aliyah hopes to offer future patients the same encouragement she found through her care team, her family and her friends from camp. She still checks in on those friends, especially when they're facing setbacks.

Dodge and Dr. Brown are both confident that Aliyah faces a bright future.

“Aliyah has been through so much but her resilience shines through. She consistently makes the best of every circumstance with a positive spirit and unwavering optimism,” says Dodge. “I can absolutely see her as a nurse, making patients’ days brighter, by empowering them, distracting them – or sharing her own story.“

Now that she’s thriving and setting her sights on college, Aliyah offers simple advice for other kids and teens in similar shoes:

"Keep your head up. You're going to be scared, but trust your care team and know that they and your family will support you. You're stronger than you think."

Learn more

The Pediatric Organ Transplant Center at Children’s Health has been a national leader in pediatric heart, liver and kidney transplants since the late 1970s. We’ve performed thousands of pediatric solid organ transplants – with excellent outcomes.

Become a donor

More than 100,000 people are waiting for life-saving organ transplants. Learn more organ donation facts, how you could save a life through living organ donation, or register as a donor through Donate Life America.