Ayden’s Story


How things can change in the blink of an eye.

Ayden Zeigler-Kohler was a 9 year old, very active, athletic, funny and caring kid who was at football practice on August 8, 2016, when he suddenly fell while running and was unable to get up.  The next few days were filled with imaging studies, blood work and surgery to figure out what exactly was going on.  Then, on August 16, 2016, his parents were given the devastating news. Ayden had DIPG (Diffuse Intrinsic Pontine Glioma).

DIPG is an aggressive, inoperable brain cancer with no cure.  Ayden was given only 9-12 short months to live. The doctors advised his parents that the standard care for DIPG is six weeks of radiation, which would shrink the tumor and allow Ayden to have a few months of “normalcy”. Steroids would be administered to help with inflammation. Chemotherapy was an option they could try, however there was not a ton of data to prove that it would even help in this situation.

As his parents made the 45 minute trip to John Hopkins Cancer Center five days a week for six weeks for radiation, they continued researching this evil cancer. They found that their only other option was to try to find a clinical trial which may or may not help to extend Ayden’s life.  They also found that not all patients are accepted to clinical trials and most times these trials are not covered by insurance.

After being denied by multiple clinical trials the Kohler’s  applied for, they decided to try chemotherapy.  As Ayden slowly began to decline, his family decided that rather than continuing to put all of their time and effort into finding a trial willing to accept him, they were going to make a lifetime of memories in whatever time they had left with him.

In between physical and occupational therapy, chemotherapy, trips to the lab for blood work, and so on, they went on fishing trips, hunting trips, daily outings, an NBA game, NFL games, and many other adventures,  Ayden even had the opportunity to host is own hunting show.

Unfortunately, Ayden passed away just 7 months and 7 days after his diagnosis at the age of 10 years old. Our mission is in honor of Ayden.

 

 

We will forever be Ayden’s Army
and
We will forever remain 4AydenStrong!