Parents make historic decision to donate their 5-year-old daughter’s brain to science after she died from cancer (exclusive)

Alison and Ben Crockett tell PEOPLE about their decision to donate their daughter’s brain to cancer research after she died at age 5

NEED TO KNOW

• Alison and Ben Crockett donated their daughter Cecilia’s brain to research after she died following a journey with pediatric brain cancer

• The donation led to the creation of the Cecilia B. Crockett Brain Tissue Donation Program at Riley Children’s Hospital
• The program has already facilitated three pediatric brain donations to advance research on rare and aggressive brain tumors

Parents are tasked with impossible choices: Where should your child go to school? Who should be their guardian if the unthinkable should happen?

But when Alison and Ben Crockett’s daughter Cecilia died following a journey with pediatric brain cancer at age 5, they faced one of the most unimaginable decisions a loved one could make— should they donate her brain to research?

The Crocketts, who share six kids, tell PEOPLE that they first noticed something wasn’t right with Cecilia when she was 4½. Their family was on a spring break trip to Maine, which is about an 18-hour drive from their home state of Indiana. When Cecilia began complaining that her head was hurting, her parents just chalked it up to being stuck in an eight-person minivan with her entire family.

But on the way home from that trip, Cecilia had a vomiting episode in the middle of the night — even though she said her stomach wasn’t upset. Over the next few weeks, she kept complaining about her head hurting, and when one of her eyes stopped tracking with the other, Alison and Ben decided to take her in to see a doctor.

“We just went to our family practice doctor, and she said, ‘I want a CT scan yesterday,’ ” remembers Alison. “That’s the kind of moment where your stomach is like, ‘No, that’s not good.’”

A CT scan was ordered, and from there, things progressed quickly. Doctors found a golf ball-sized mass in the geographic center of Cecilia’s brain, which was blocking the flow of cerebrospinal fluid. This blockage caused hydrocephalus symptoms, which resulted in her eye not tracking and the brutal headaches.

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Alison and Ben waited at the hospital for 12 hours so Cecilia could get an MRI. By 9 a.m. the next morning, Cecilia had her first emergency brain surgery to drain some of the cerebrospinal fluid. She then had a few more surgeries over the next few weeks to put in both a shunt and port.

“It’s a yucky kind of tumor,” Alison tells PEOPLE of Cecilia’s tumor. “Obviously, not an easy one to get to, right in the center of the brain, but also a blastoma, which means really fast-growing. And it had already metastasized down her spine at that point. There were several lesions down her spine.”

Alison remembers asking for a prognosis from the doctors, but not getting a clear answer. “We knew it wasn’t great, but no one would tell us,” she says.

“Within a day or so, we realized that our lives were going to change,” shares Ben. “I remember sitting in this consultation room with [their doctor], and he sat with Alison and I, and he looked at us, and he said, ‘Now, I want you to understand your lives will never be the same.’”

“And he was right, I don’t think we could even comprehend at that point what he meant,” he continues. “But within just days, as Alison described, as we started to research any type of brain tumor, particularly with pediatric patients, we realized there was so little information, little research.”

“And yet the more we dug in, the more we realized that this is a big issue, but we don’t have a lot of answers because there’s just not a lot we do with our brains for research because nobody’s going to take their child in to do something with the brain.”

Alison immersed herself in the research. She sourced everything she could online and learned that Cecilia’s prognosis was “very, very not promising” that she would survive. They found that most kids would live for only a couple of months before their parents had a very hard decision to make.

She also found that if kids do survive Cecilia’s form of cancer the first time, it often comes back anywhere from three months to three years. The idea of having to put their family through cancer treatment, only to have to endure it again a few months later, was just “so much” to bear.

Cecilia underwent multiple rounds of chemotherapy. During her first round of chemo, her tumor hemorrhaged and she almost died that day. She was quickly hooked up to a bag of platelets and “miraculously” lived as she went in and out of chemo for 15 months.

Ben and Alison also decided against radiation for Cecilia because they’d seen research on the long-term effects on toddlers’ brains.

But throughout every hard moment, and every breath held, Alison and Ben remember that Cecilia was “just amazing.”

“I think children are...so much more resilient sometimes than we are as adults,” says Ben. “But she would say things that were so incredible and so powerful.”

After her tumor hemorrhaged in 2022, doctors told Alison and Ben that Cecilia would only live for maybe 24 hours to up to a week. They decided to take her home, since she wanted to be amongst her siblings. And somehow, someway, during that summer, Cecilia recovered.

Along with the help of her pain pump — which she called George — Cecilia began to walk and talk again. Ben remembers it as “absolutely remarkable” and the catalyst for their decision to start chemotherapy again in late 2022.

Unfortunately, Cecilia’s second and third rounds of chemo had varying results. As they approached Christmastime, she got horribly sick. She had several different infections and was on a plethora of medications.

Then, in January 2023, Cecilia had brain surgery again. Doctors told Ben and Alison that Cecilia might not wake up for the next few days as her body helped her recover from the major operation.

“And at about 6:00 a.m., I hear this voice that says, ‘Daddy, can we wake up?’ And I’m thinking to myself, ‘What in the world?’ ” says Ben. “I went over to her bedside, she sat up, and I just had this thought, I don’t know why, but I just said, ‘Cecilia, how are you so brave?’”

“And she looked at me and in perfect clarity said, ‘Daddy, I have important stuff to do,’ ” he continues. “And she closed her eyes, and she laid back down, and I don’t think she woke up again for 12 hours or another day.”

While doctors went in several more times to cut Cecilia’s tumor, it just kept regrowing. As the months passed in 2023, Alison and Ben understood that Cecilia was running out of time. In February, a thought occurred to Alison.

“It’s hard to even imagine this, and even as I say it, it hurts a little, but [Alison] had this thought, ‘If we’re going to lose the battle, is there at least something we could do to either save Cecilia’s brain tissue or do something to further research?’ ” says Ben.

In the midst of all her exploration, Alison found a few studies on brain tumor patients in the United Kingdom that suggested parents donate their child’s brain to cancer research after they die.

“And I was like, ‘Wow, none of the U.S. articles say that,’ ” she remembers. “I don’t know if people do that here. It feels like there’s some neuro-ethics involved, because the brain is the center of your identity. It holds all your memories.”

“And especially for someone who can’t make that decision for themselves, they’re too young, there’s some tension there,” continues Alison. “It’s kind of tricky. So I mulled that over and then I brought it up to Ben, and those are hard conversations.”

Ben doesn’t remember exactly how he responded, but says he recalls being “sick to my stomach.” But two weeks later, they talked about it again, and Ben acknowledged that they were losing the battle.

“And that’s part of it, you’re in denial. She’s still among us, walking around and talking and being herself, and you don’t want to think about what might happen even if the writing’s kind of on the wall,” says Alison. “You still want to leave room for a miracle, or you hear things like, ‘Oh, and then their tumor turned to mush.’ And you’re like, ‘Well, you never know. I don’t know.’”

Eventually, Alison and Ben decided to bring the question of donating Cecilia’s brain up to her doctor. Her hospital had never dealt with a pediatric brain donation before — but they told the Crocketts that with enough lead time, they’d be able to make it happen.

Almost a month later, Alison and Ben got the call. While Cecilia was walking, talking and playing with her siblings in the house, they heard from her two doctors — Dr. Taylor and Dr. Lyon — that they’d found a way to save her brain tissue. But they wanted to ensure the family still wanted to move ahead with the procedure after Cecilia died.

“We sat there, and I cried because I’m thinking, ‘How in the world do you answer this?’ ” says Ben. “And I just remember saying to Dr. Lyon, ‘Dr. Lyon, is this really going to make a difference? Because if it’s not going to make a difference, no, I don’t want to go through this. I don’t even want to think about it.’”

“And he just said, ‘You don’t understand, but this will absolutely make a difference. We can’t solve the issue of brain tumors without research, and we can’t do research if we have no tissue,’ ” Ben recalls the doctor saying. “And he’s like, ‘This will absolutely make a difference.’ Through the tears and looking at each other and holding hands, we said, ‘We’ll do it. We’ll do this.’”

Behind the scenes, doctors raced to file for grants and to find a specialist who could help with the procedure. Cecilia began to lose her eyesight and started to use a walker to get around the house. And on July 19, 2023, she died. The hospital had set up all the proper procedures, and they were able to collect her brain tissue.

“What we didn’t realize at the time, I don’t think, of that conversation with Dr. Lyon now, was that her brain tissue would be, from what we know, one of the first ever in the whole State of Indiana and the whole IU system, and one of only a couple in the whole United States and probably the world [that was donated from brain cancer],” says Ben. “That alone was just so significant.”

A few weeks later, after Cecilia’s funeral, Alison approached Ben about creating a fund to help further pediatric brain cancer research.

“When Alison mentions this, I’m like, ‘Are you kidding me? Alison, we’ve got to get back on our feet,” remembers Ben. “We were very lucky, between everything, that we were not going to be bankrupt.”

“We came to Dr. Taylor, the neurosurgeon, [and] we’re like, ‘We want to do something to help your research. We have no idea what’s next, but neither of us have the capacity to run a foundation,’ ” recalls Alison. Dr. Taylor suggested that Alison and Ben create a named fund under the Riley Children’s Foundation umbrella so the organization could help with some of the legwork.

The cost of creating a fund like that was $25,000. For any family, that is a large amount of money — even more so when a family has gone through what Alison and Ben had. But they saved, and in June 2024, about a year after Cecilia passed, they made their donation and created the Cecilia B. Crockett Brain Tissue Donation Program.

“We wrote the check and said, ‘We’re going to start a dedicated fund to support the research that’s being done on Cecilia’s brain tissue and to start something,’ ” says Ben.

After donating, Alison and Ben wanted to be involved and updated on what was going on in the foundation. Ben began getting breakfast with Dr. Taylor and Dr. Wade Clap, head of pediatrics for IU, once a week on Thursday mornings. It was there that he realized their vision and how he could help move it forward. They set up a five-step plan to follow over a period of 10 years, and their number one goal was getting $50,000 in donations.

In just a short amount of time, through family and friends, they raised $50,000. They kept pushing through connections, friends and miracles, and have now been able to raise almost a million dollars.

“We started to realize that preserving Cecilia’s brain tissue was the start of something of a miracle, like a painful miracle,” says Ben.

There’s now even a brochure on the Cecilia B. Crockett Brain Tissue Donation Program at Riley Children’s Hospital, where Cecilia was cared for.

“I think everybody kind of knows about organ donation, but kids cannot donate organs,” says Alison. “But a lot of different kinds of children who pass away can donate their brain if the parents know that they can.”

“And as of right now, with the new Cecilia B. Crockett Brain Tissue Donation Program, there are three whole brains that have been donated, with Cecilia’s being the first,” she continues. “So it’s already started to work.”

After Cecilia died, Ben and Alison buried her at a cemetery just two miles from their home. They often go to visit with her and bring along their other kids, who the two say will “never be the same.”

“There was something really powerful that Alison helped highlight when [she] spoke at [Cecilia’s] funeral, and it was during those last couple of weeks when [Cecilia] would remind us to say what we were grateful for, and she would take a turn as well,” remembers Ben.

“And at one point during those final days, she spoke up, and she said the word, ‘I’m sad-grateful,’ ” he continues, explaining that Cecilia said she was sad to have to “say goodbye to my family” but also grateful for being able to come home and not have to go through chemotherapy anymore.

“Alison highlighted that in this little child’s mind, she understood a principle that applies to all of us, that you can be sad and grateful at the same time,” he shares. “We all feel pain. We all have suffering. We all go through hardships. And in the middle of it, in the middle of being sad, which is okay at times to feel that, you can still be grateful.”

“And when you are, it really does turn things around.”

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