Raylan Acker was diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma) at the age of 17 months in 2016.
DIPG is a brain tumor found in a part of the brain stem called the pons. The pons controls essential bodily functions such as heartbeat, breathing, swallowing, eye movement, eyesight, and balance. DIPG affects children almost exclusively. Approximately 200-400 children in the U.S. are diagnosed with DIPG each year. These children are typically between the ages of 4 and 11. DIPG accounts for roughly 10-15% of all brain tumors in children. DIPG is an aggressive tumor that interferes with all bodily functions, depriving a child of the ability to move, communicate and even to eat and drink.
As a DIPG tumor begins to grow, it puts pressure on the nerves that control the essential bodily functions regulated by the pons. Children with DIPG commonly experience double vision, reduced eye movement, facial weakness or asymmetry and arm and leg weakness. They also have problems with walking, coordination, speech, chewing and swallowing. For more information please visit https://dipg.org/.
Since Raylan’s original diagnosis, the original tumor showed no growth on the MRI’s. However, May of 2020 Raylan had a setback. After waking up one morning his balance was off, so his parents took him to the doctor for a checkup. It was at this time they found 3 additional tumors which required surgery. First surgery was exploratory for Raylan’s team of surgeons and the second was removal of the tumors. The operation removed 70% of the tumors and Raylan was discharged from the PICU in June. Raylan returned back home to recover from his extensive surgery. He continued his treatments and PT/OT. Unfortunately, over the next few months the cancer had spread and his time was limited. Raylan passed away at the young age of 5 on October 24, 2020.
Top Gun has had the honor of helping Raylan Acker with fundraising efforts to battle this ugly disease since 2017. We will remember him as the little boy who loved to run around and ride on the quads at the softball tournaments. We will forever remember Raylan’s sweet smile and laughter who touched all our hearts in such a short amount of time.
Rest in Peace, Raylan Acker.
FOREVER Super Hero Strong.
