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Our kids inspire us to fight to defeat DIPG.

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On June 16th, 2023, 20 year old, Ciara Tomlinson’s life was changed forever. Ciara was a rising junior at Florida State University and had been on the Deans list since attendance of college. She was also a sister of Pi Beta Phi.
Ciara had been a perfectly healthy and joyous child growing up, until the end of 2022. She first started experiencing dizzy spells, followed by constant nausea, throwing up bile every morning, double-vision, slurred speech, and partial facial paralysis. We sought help from doctors for 7 months. We pleaded for tests to be ran and scans be done. Bloodwork was conducted on multiple occasions and a CT scan was performed during Ciara’s spring break. All in which was found to be cleared and normal. She was thought to have vertigo to which an ENT specialist said what she has is not vertigo. Thereafter, doctors diagnosed Ciara with anxiety and depression as everything else was normal. Months went by and the symptoms did not improve. Ciara finally started having partial facial paralysis. Upon further advocation and pushing for answers we demanded a MRI be performed.
June 16th Ciara received a call from her physician that every parent dreads. She needed to be driven to the emergency room immediately as a tumor was found in her scans the day prior. After further investigation from neurosurgeons at Sarasota Memorial Hospital and Shands Hospital in Gainesville, it had been confirmed that Ciara has been living with a 3.5 cm tumor growing in the middle of her brain stem in the 4th ventricle. Due to the location of the tumor, doctors ruled the situation to be inoperable. A brain biopsy was then performed and the pathology report noted that the tumor is diffuse intrinsic pontine gliomas (DIPG). The prognosis was devastating as that only gave her just 6-9 months to live. Being the fighter that Ciara was, she underwent 8 weeks of radiation. After that, Ciara went on to participate in a clinical trial in hope of finding a treatment that would help eradicate her tumor. Unfortunately, the tumor grew back after only 4 months of being on the clinical trial.

On Tuesday, February 6th, 2024, Ciara succumbed to DIPG with her family and friends at her side. Her passing will leave a void that will be deeply felt by all who knew and loved her.

The Tomlinson family will forever be grateful for the support and love shared during this challenging time. All of the support given to Ciara will never be forgotten.

What is DIPG?

DIPG is a devastating and aggressive brain tumor typically found in children.

What is ChadTough Defeat DIPG?

Learn about our founders, mission, and impact.