5 years old is the age of play dates and Disney movies. A time for children to laugh and play and enjoy having no responsibilities. For Lindsey Steltenpohl, her life was a different story. At only 5 years old she was diagnosed with DIPG or Diffuse Intrinsic Pontine Glioma. The headaches and balance problems that they thought were just the result of allergies, turned out to be symptoms of a disease that would change their lives forever. At her five-year checkup, they told the doctors about the symptoms and they decided to perform an MRI which showed the tumor, leading to her terminal diagnosis. That day, Christy was told something that no parent wants to hear: that her daughter was going to die. She was told that there was no hope and no treatment plan that could cure her. Lindsey soon began the standard radiation program for 6 weeks and a little chemotherapy. They began to travel for more options and second opinions, looking for anything that could save Lindsey’s life. Throughout the journey, Lindsey lived an active and healthy lifestyle. Lindsey was lucky to be able to have a “honeymoon period” and to live a normal life for 9 months other than going to doctor’s appointments. Her tumor then began to grow, leading them to undergo a second round of radiation. Unfortunately, the radiation treatments were not very successful. They never stopped fighting and looking for a cure. Lindsey lived for 16 months after diagnosis but sadly passed away a few days after her 6th birthday.
The best advice Lindsey’s mother, Christy, can give for others experiencing this horrible disease is to have hope and to never feel defeated. You need to figure out what you can do to make the most out of this horrible situation. Once diagnosed and processed, to Christy, it is important to reach out to those with the same experience. You have to connect, have the support, and have someone who understands the good and the bad of this journey. Going through this journey alone and without support is too hard to imagine. Everybody handles the situation differently. Some will not want to talk and that is how they move on. For Christy, trying to find a way to help the DIPG community is the best way for her to move forward and feel like she’s making an impact on the cause. Good can be found in any situation you just have to find it.
Lindsey’s journey was one of the hardest and most painful things to witness. DIPG is one of the cruelest diseases to ever see. Christy goes so far as to compare it to the childhood version of ALS as it incapacitates the person. It is quickly thrown at a person and there isn’t a lot of time or things to do. This disease is not something that one can just take out or get rid of. It is like pepper and Jello- if one were to pour pepper into Jello and try to get it out, it would be nearly impossible. This is one of the reasons that DIPG is so hard to treat. Until there’s research there is not going to be an answer for this disease. DIPG does not affect a broad amount of people but that does not mean that it is not important. We need passionate people who want to contribute and work for a cure. Lindsey’s battle was filled with both good and bad times but the memories that Christy has with Lindsey from those times will never be forgotten. Lindsey’s strength and bravery during her battle will forever inspire her family to live courageously in her honor.