Jace photo 1 resized

Fighting for Jace

By Jennifer, a Children's National parent

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Our son Jace was born healthy and energetic. As a toddler, he wanted to explore everything. He discovered the path in our backyard that leads to his grandparent’s house at 3 years old. He would take off, and I’d find him helping his grandfather in the garden or throwing a ball for the dog. Jace always looked for joy and found it wherever he went.

One Saturday, when Jace was 4, we noticed him dragging his left leg intermittently. Sunday morning he was holding his left arm close to his body. On Monday we took him to his doctor who ordered a CT scan at the local hospital. Brain tumor. Just like that, our lives stopped.

Doctors at Levine Children’s Hospital in Charlotte, North Carolina, diagnosed Jace with diffuse intrinsic pontine glioma (DIPG). It is an aggressive and terminal-upon-diagnosis cancer. Care providers said we should bring him home, enjoy his last few months and make special memories. But Jace was a fighter. The oncologist told us of a clinical trial underway at Children’s National Hospital that might help. When we met with the DIPG clinical trial team there, they earned our trust quickly.

Roger Packer, M.D., Director of the Brain Tumor Institute at Children’s National, Eugene Hwang, M.D., and Lauren Hancock, N.P., treated us with great compassion. They were also wonderful to Jace. Dr. Packer’s hand puppet and the toys in the waiting room comforted him.

They also developed a treatment plan.  It started with eight weeks of radiation therapy administered at the hospital near our home that had diagnosed him. Physical therapy helped Jace to walk again. That day he took his new first step was a great day.

We traveled back and forth from North Carolina to Washington, D.C., for testing and evaluation until we could begin infusions. When the tumor progressed, Jace kept fighting despite losing his ability to walk, talk, sit, and breathe. He fought for 347 days. He passed away not long after his 5th birthday.

For Jace’s memorial service, we asked friends and family to donate to Children’s National. That effort grew into the Warrior Jace Thompson Foundation. The Foundation aims to raise awareness and funds to support doctors and researchers in finding a cure for DIPG. Just like Jace and his team, we will never stop fighting. Jace’s mantra throughout his 347-day battle against DIPG was, “Can’t Stop Me!” We will continue his fight!

A young patient at Children's National Hospital.

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A young patient at Children's National Hospital.