Ali Thomas of Bertram is battling Stage 4 kidney failure. The 13-year-old and her family have paired with the Children’s Organ Transplant Association to raise money during this emotionally, physically, and financially draining time. Staff photo by Nathan Bush
Ali Thomas of Bertram was the typical young teen. She enjoyed riding her bike, playing with her dog, listening to the latest Billie Eilish songs, and swimming. But in September 2021, her life was turned upside-down after a visit to the emergency room for a stomach ache.
Initially, it was assumed something was wrong with her appendix. However, after running a litany of tests, doctors told her mother, Kelly Thomas, they had found the source of her pain: kidney failure.
“They called an ambulance and said they were shipping her to Dell (Children’s Hospital in Austin),” Kelly said. “It was a really long night, and she was in pain all night long.”
Along with being physically and emotionally taxing, treatment for kidney failure can be financially burdensome for families. To help fend off exorbitant medical bills, Ali’s doctors suggested connecting with the Children’s Organ Transplant Association.
“They help raise funds for any of her medical costs that aren’t covered by her insurance,” Kelly said. “All the money stays in the account for Ali in the case she needs another transplant down the line.”
A major tenet of the organization’s mission is to encourage parents to focus on the emotional needs and care of their children rather than on raising money for medical bills. Instead, COTA tells parents to assign someone else in the family to manage fundraising campaigns for patients.
Kelly reached out to her sister Sandy Hickman to guide the family through COTA’s process. Even though Hickman lives hours away in a little town in Oklahoma, she jumped at the chance to help her niece.
“Kelly reached out to me and asked if I could do this,” Hickman said. “Of course, I said yes.”
As 13-year-old Ali’s condition progresses, her kidney function worsens.
“Last time, they told us we were on the hairline of dialysis,” Kelly said. “Within a year, she’s gone all the way down.”
Ali is slowly drifting into Stage 5 kidney failure, meaning she will need to undergo dialysis treatments, dramatically decreasing her quality of life.
If Ali does move into Stage 5, she might need treatments three times a week. The demanding treatment cycle will force her to attend school remotely for more than half the week, robbing her of classroom experiences and valuable learning time.
“As a teenager, if she has to miss three days of school every week for dialysis, it means she has to do (school) on the computer,” Kelly said. “It really limits what she’ll be able to do.”
Her Burnet Middle School teachers have been very adaptive to Ali’s specific needs as she goes through this difficult and challenging time.
“The school has been really good,” Kelly said. “She gets tired a lot. They let her sleep for an hour. They’ve been working with her.”
Doctors have already run several transplant intake tests. If she starts dialysis, Ali will be put on the transplant list.
“We are actively putting out the word that she will need a donor,” Kelly said. “We would prefer a live one, but if a deceased one came in, of course, we’d take it.”
The eventual transplant will be the first of several Ali will need throughout her life.
“Transplants typically last 10 to 15 years,” Kelly said. “She will probably have three in her lifetime.”
Ali’s positivity throughout this experience is something to be admired, her mother said.
“She’s doing really good,” Kelly said. “She’s staying very positive.”