Hope Through Hollis

Posted by AureliaEffect on February 27, 2017

As a community of developers, we often get to share the joy of each other's successes. However, sometimes, people close to us experience great pain or loss as well. In those times, it's all the more important to help support and lift each other up. Below, I've invited Aurelia Core Team member, Shannon Horn, and his family to tell us about their Hollis, a vibrant young man, whose time was too short with us.

On Sunday, March 20, 2016 Hollis Doherty suffered significant headaches with double vision, nausea, and weakness. He continued to have these symptoms for a week and, after various Doctor visits, CT scan and MRI, his family learned that doctors discovered a tumor on his brain stem. On March 29th, he was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG).

DIPG is a brain tumor found in a part of the brain stem called the pons. The pons control essential bodily functions such as heartbeat, breathing, swallowing, eye movement, eyesight, and balance. DIPG is an aggressive tumor that interferes with all bodily functions, depriving a child of the ability to move, to 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. As the tumor progresses, it also interferes with breathing and heartbeat, which ultimately results in the child’s death.

DIPG Diagram

DIPG affects children almost exclusively, typically between the ages of 5 to 10. Approximately 200-400 children in the United States are diagnosed with DIPG each year, accounting for roughly 10-15% of all brain tumors in children. The average life expectancy for a child after diagnosis is 9 – 12 months. Currently, there are no known cures for DIPG.

Upon hearing the grim prognosis, his parents researched potential treatments and decided to pursue Immunotherapy at the IOZK clinic in Cologne Germany. He received 7 treatments and remained largely symptom free for 9 months. However, on December 28th he experienced a headache and a couple days later had another accompanied by vomiting. His parents took him in for an emergency MRI on January 1st which revealed the cancer had started growing again. He continued having symptoms overnight and died on the 2nd.

His parents have donated his tumor for research and will continue to seek a cure through the Hope Through Hollis campaign. For more information, please visit http://hopeforhollis.org.