Lydia Sharpe was an easygoing five-year-old with boundless enthusiasm – even for mundane errands.
“If I had to go to the grocery store, she would always say, ‘Shoo-ah,’ which was her way of saying ‘Sure,’” her mom, Tara, remembered.
Lydia had a knack for spotting even the faintest jet contrails in the sky and dreamt of becoming a pilot, and later, an astronaut. She loved attending Sunday school, collecting fallen leaves and rescuing worms who had washed up on sidewalks during storms. Her bedtime routine was only complete once she’d lip-synced to her favorite song, Billie Eillish’s “Ocean Eyes.”
In her summer track program, Lydia was known as one of the fastest, most athletic five-year-olds out there. So her parents Tara and Jonathan were bewildered when, in July 2021, she began tripping and falling for no apparent reason. Over the course of a few weeks, more mysterious symptoms presented, including severe stomach aches and a drooping eyelid. Tara and Jonathan took her to their local children’s hospital in their hometown of Knoxville, Tenn., where they received devastating news.
Lydia was diagnosed with a rare, aggressive brain tumor known as diffuse intrinsic pontine glioma, or DIPG, on August 7, 2021. Without treatment, doctors said she was expected to live anywhere from three weeks to three months. The family agreed to treat the tumor with steroids until Lydia experienced severe complications.
“We knew our time with our daughter was very limited, and in her case treatment would only prolong her life by a matter of weeks,” Jonathan said. “We made the difficult decision to choose the quality of our time together over quantity.”
Together, Tara and Jonathan, and their daughters Amelie, 15, and Madeline, 8, made it their mission to make as many rich memories with Lydia as possible. One special highlight included a propeller plane ride around Knoxville.
On September 26, 2021, Lydia passed away, surrounded by her parents and sisters.
In the wake of their family’s staggering loss, Tara and Jonathan found themselves desperate to protect other parents from pain like theirs. They opted for organ and tissue donation, and decided to donate Lydia’s brain tumor to research.
“It makes you feel better as a parent to know that something good can come from this horrible thing,” Tara said.
“Making the best of total disaster”
At Lurie Children’s, Melissa Williams supports families like Lydia’s who wish for tissue donation to be part of the end-of-life process. Lurie Children’s participates in the Children’s Brain Tumor Network (CBTN), a collaborative, multi-institutional research program dedicated to the study and the treatment of childhood brain tumors. CBTN allows researchers from across the world to work together to find cures and consists of 18 primary member institutions, including Lurie Children’s. As a tissue navigator, Melissa’s role is funded by the Swifty Foundation through their Gift from a Child initiative.
When Tara and Jonathan learned Lydia’s brain tumor would be studied at Lurie Children’s, “I felt the need to make sure it arrived there, and I just had to talk to somebody,” Tara said. “That’s when I talked to Melissa. I said, ‘I want you to know who our precious daughter was,’ and I sent her some pictures of Lydia.”
In their conversations, Melissa assured Tara that the family’s donation was a significant contribution to the advancement of pediatric brain tumor research, an area of research that receives only four percent of the NIH budget.
“To us, tumor donation is doing the best we can to fight the disease, so that our loss is not all for nothing,” Jonathan said. “In a way, it feels like Lydia is fighting it in her own way.”
Lurie Children’s is one of only six Centers of Excellence within the Gift from a Child network. Each Center of Excellence has a Tissue Navigator and in December 2017, the Swifty Foundation funded the role of a tissue navigator at Lurie Children’s to inform families of their options in regard to tissue donation and to manage the logistics to relieve families of the responsibility.
“There were a million great qualities about our daughter, but what was amazing about Lydia is that she always put other people ahead of her,” Tara said. “We believe that if she was older when this had happened, she would have said, ‘Yes, take this tumor and see if it can help in the fight with DIPG.’”
The Sharpe family is grateful to pediatric cancer researchers in the CBTN who are committed to developing more effective treatments for brain tumors like DIPG, and to selfless donors and generous philanthropists who make research possible. In addition to sustaining Lydia’s legacy through research, they find her memory shapes every day of their lives.
“When Lydia got sick, it made me start looking at the world like she did again,” Jonathan said. “She was just in awe of so much. That’s why she loved to go on walks in the forest and woods. Everything was new and exciting for her. She’s taught me a lot since her diagnosis. We’re utterly changed after this.”
About Gift from a Child
Gift from a Child’s (GFAC) mission is to increase post-mortem brain tissue donations through advocacy, partnerships and education of families who have just lost a child to brain cancer. Initiated in December 2018, GFAC is supported by families who have lost children to brain cancer, private foundations, researchers and medical professionals. GFAC also has created strategic partnerships with the Children’s Brain Tumor Network (CBTN), the world’s largest pediatric brain tumor database, and regional medical sites known as centers of excellence. These centers of excellence currently include Ann & Robert H. Lurie Children’s Hospital, Children’s National in Washington, D.C.; Stanford University Medical Center; Children's Hospital of Philadelphia; Weill Cornell Medicine in New York; and Orlando Health Arnold Palmer Hospital for Children. Each of these centers is responsible for the coordination, processing and storage of donated tissue within their region and has a tissue navigator on site. GFAC is an initiative funded by the Swifty Foundation, a pediatric brain cancer research foundation located in Woodridge, Illinois.
About Lurie Children’s Pediatric Brain Tumor Research
Our multidisciplinary team of physician-scientists develops and participates in innovative research to offer new treatments, improve the standard of care and increase knowledge about the biology of brain and spinal cord tumors. Research is a central component to our center’s mission. Our efforts are focused on clinical trials, basic and translational research, and quality of life and patient outcomes research. Learn more