Addison Grace Holl was a funny, kind, intelligent, lovable seven year old. Any room was brightened by her presence. She was always dancing, singing and was a really happy little girl. She played soccer and loved to spend time with her friends. She loved her family dearly and always displayed that with great affection. She had the most beautiful blue eyes that you have ever seen.

Addison, the first-born child of Kim and Aaron Holl, started to experience double vision the when she was six and a half years old. The double vision was intermittent. It happened at first only when she had a fever. Mother’s instincts told Kim to get to the bottom of the cause and she insisted upon appointment after appointment until one ophthalmologist ordered a precautionary MRI.

In the past decades, there have been so many medical advances in terms of the survival rates for children diagnosed with most types of cancer. That was not the case for the type of cancer that Addison was diagnosed with on her seventh birthday after the precautionary MRI. Addison was given a diagnosis of Diffused Intrinsic Pons Glioma or DIPG. There have been NO advances in the treatment or survival of any child given that diagnosis. Just like any child receiving a DIPG diagnosis, Addison was given about six months to live.

Addison lived almost two years after receiving that horrific diagnosis. For more than a year, Addison was symptom free and required little more than the occasional MRI. After she became symptomatic, Addison fought hard with little complaint. She was loved each and everyday and passed away with family by her side one month before her ninth birthday. She was robbed of decades of life, as were those that loved her.

Addison Grace Holl should be remembered for the brilliantly shiny eight year old and not the girl with a brain tumor. Cancer doesn’t define her but it is one part of the story.

Her parents honor her by never giving up, as she asked that they do just days before she died. Fighting DIPG has become a mission for all those close to Addison and that mission won’t stop until DIPG is defeated!