Violet’s story: A tiny superhero with incredible strength

When Alicia drops her daughter Violet off at kindergarten, her school is ready: They come with a wagon for Violet’s backpack and oxygen tanks.

“I set her down and she grabs her walker and just goes for it,” Alicia says. “She’s so excited to go to school. Sometimes when I drop her off it feels like a ‘pinch me’ moment because we never thought this would happen.”

Violet lives with a rare genetic syndrome called MIRAGE syndrome. Children with this condition often have a life expectancy of around 4 years old – and Violet just turned 6.

“At first, people notice how tiny she is and that she walks with a walker,” Alicia says. “But give her five minutes and she’ll surprise you. She’s a superhero. She’s so incredibly strong – that’s why she’s come out of multiple hospital stays she shouldn’t have come out of.”

Solving the puzzle

Violet came into the world seven weeks early in February 2020. She was in the neonatal intensive care unit (NICU) at the hospital where she was born for 81 days, working through challenges with eating and breathing.

She got well enough to go home, but in December that year, she came to the Children's Health℠ Emergency Department with severe COVID-19. Violet and Alicia spent 17 days isolated in the COVID-19 unit – where the care team noticed Violet was having seizures.

Her severe case of COVID-19, along with her challenges with feeding, growth and seizures, were signs that something more serious might be affecting Violet.

After talking to a good friend (who was also a Children’s Health nurse at the time), her family put genetic testing at the top of their to-do list.

“She told us we have all of these puzzle pieces and genetic testing might give us the whole picture,” Alicia says. “She was right and we are forever grateful.”

“It felt like the air was sucked out of the room.”

Genetic testing revealed that Violet was born with a rare genetic condition called MIRAGE syndrome. It can affect the body in several ways, including bone marrow problems, developmental delays and a weakened immune system.

Kids who have MIRAGE syndrome often die of infections early in life because their immune system has a hard time fighting off germs. Differences in the blood and bone marrow can also make a child more likely to develop myelodysplastic syndrome, a rare blood cancer.

Luis Umaña, M.D., Pediatric Genetic Specialist at Children’s Health and Associate Professor at UT Southwestern, gently explained Violet’s test results.

“It felt like all the air was sucked out of the room,” Alicia says. “The fear sank in, as we realized this syndrome wasn’t supposed to let Violet live for very long.”

But Violet’s diagnosis came with a plan, a sense of urgency and a care team lead by Kathryn Dickerson, M.D., Pediatric Hematologist/Oncologist at Children’s Health and Assistant Professor at UT Southwestern – who Alicia calls Violet’s “lifeline.”

A world tour of specialists

Alicia described the weeks that followed as Violet’s “world tour of specialists.” Her Children’s Health care team included pediatric immunologist Chris Wysocki, M.D., to help manage and prevent infections and pediatric pulmonologist Steven Copenhaver, M.D., to help with Violet’s breathing and lung scarring from past infections.

Her care team did everything they could to keep Violet as healthy as possible. But inevitably she caught a few colds and landed in the hospital multiple times.

“When our son isn’t feeling well, the answer is usually rest, fluids and maybe Tylenol,” Alicia says. “But if Violet gets sick, she can spiral. If you don’t do exactly the right thing at the right time, she’ll end up in the emergency room. Her whole body basically just shuts down.”

For the first few years of her life, Alicia describes Violet as living “in a bubble.” They put a barrier on her stroller to help keep germs out. And they didn’t take her around other kids – or even outside sometimes – for fear she’d catch something.

The game-changer came when Dr. Wysocki recommended weekly infusions to give her the immune system cells her body doesn’t have to help fight infections.

With frequent infusions, she was sick less often and had fewer trips to the emergency department. She started coming out of her bubble. And her care team started talking about something they never thought possible: going to school.

Changing the odds

Dropping Violet off for her first day of preschool was surreal.

“For the very first time, I went home and she wasn’t there,” Alicia says. “She was in a classroom, with other kids, learning, going to recess. For the first time, she was doing something exciting that had nothing to do with her diagnosis.”

These days, Violet loves music and is learning the alphabet. If you wear a shirt with letters on it, she’ll point to each one, expecting you to say them aloud and then have you read the whole word together.

She still has regular visits with all of her doctors – most of whom now offer care at Children’s Health Plano. Even better, she can now see many of them in a single visit at the Children’s Health PITCH Clinic (Pediatric Immunodeficiency/dysregulation Treatment Center in Hematology[1] ), established in 2025 and led by Drs. Dickerson and Wysocki.

“They’re her team and I’d drive as far as I needed to see any of them,” Alicia says. “But it’s really nice that we can now see most of them in Plano – so she doesn't have to miss a full day of school for appointments.” [MH2]

Watching Violet’s doctors talk through her care plan together gives Alicia deep peace of mind.

“My biggest thing with Violet is trust and I don’t trust a lot of people with her,” Alicia says. “But with her team, I feel like I could curl up on the couch and go to sleep because I know she’s in good hands. They know her and they know the syndrome and that makes all the difference in the world.” [3]

Dr. Dickerson doesn’t just know MIRAGE syndrome – she’s on a mission to change the odds for kids who have it.

Developing “super-strength empathy”

Now an “experienced medical mom,” Alicia spends a lot of time connecting with other families impacted by rare diseases. She thinks deeply about how to make sure her other two kids feel just as loved and get the same attention. She knows it's hard for them to have a sister with complex medical needs, but it’s given them what Alicia calls “super strength empathy.”

“My younger daughter is only 2 but she knows when Violet is feeling down and will cuddle right up to her,” Alicia said. “Our 9-year-old son will be the first to go talk to another kid with a walker. And he wishes people would stop calling Violet ‘nonverbal,’ because she's clearly communicating and ‘we just need to figure out what language she’s speaking.’”

If there’s one thing the family wants others to know about children with rare disorders, it's this:

“There’s a child behind that diagnosis – and a family who, not long ago, was just like yours but has now been given a fight,” Alicia says. “So instead of talking about that child or feeling sorry for her, talk to her. Get to know her. Because behind that diagnosis is a child who has taught us so much – and who will show you what an amazing human she is.”

Learn more

The Pediatric Immunodeficiency/dysregulation Treatment Center (PITCH) in Hematology Clinic at Children’s Health offers highly specialized care in Plano for children with rare and complex genetic disorders like MIRAGE syndrome and inborn errors of immunity (IEI). Learn more about the program.