As any loving parent, Tim Gillen was shocked that the disease had emerged and now had to face the tough reality of taking care of two beautiful boys grappling with a rare disease. “I would say that my initial reaction was shock and fear—shock that this happened to my children, fear of the unknown, dread of what was to come. The boys’ mother, Lynne, tried to fill me in on what to expect, but at the time, I had no idea of the reality of how difficult and far-reaching the difficulty would become. I was very dismissive of Lynne’s initial concerns and her experience with the disease,” Tim said.

With many reactions and disagreements between the two parents about what was going on, Tim and Lynne divorced. “My poor reactions definitely caused a severe disconnect between the two of us, and she eventually divorced me in 2002,” Tim added.

“The boys kept losing abilities, and from a parent’s perspective, it was very difficult to watch and still try to be encouraging to them. The big thing they lost the ability to do was walking around age 10 and being able to raise their hands off their lap around age 14,” Tim narrated. He recalled one event that stuck in his memory: “I remember being woken up by Everett’s doorbell that he held in his hand while sleeping at about 3:30 AM one night. All he wanted was for me to help him scratch his eyebrow!”

With time, Everett and Austin needed help getting out of bed around age 10. At around age 11, picking them up under the shoulders was very painful, so we shifted to using a Hoyer lift to get them up off the ground where they were playing, onto the toilet for bowel movements, or out of bed and into their wheelchairs. From the parents’ observation, picking them up under their shoulders caused their shoulders to crush into their spine and lungs because of weak muscles. “Lifting them up by myself was quicker and easier, but I switched to the Hoyer lift for their comfort’s sake.”

With Duchenne, you don’t live so long—the life expectancy is always 15 to 20 years. “My boys were diagnosed in 1997. Austin died at age 16 in 2012, and Everett died at age 22 in 2017.” That wrapped up Tim’s days with the boys—it could only take time.

Now, Tim, no longer with the boys, embarked on a journey to recovery. See, something with death—we humans never get used to it, even when we expect it. And that was the way with Tim: the pain, the misery, the memories—all he had to endure and heal at once. Every day was healing, no matter how painful it seemed.

“The principles learned in recovery from addictions have been very instrumental in my peace and well-being. One of the principles is: in order to keep my recovery, I ‘have to give it away,’” Tim told me. So Tim didn’t use his pain to break down—he used his pain to further his life and lift those of others. He birthed The Everett and Austin Project to take care of other Duchenne patients and to extend a hand of charity to the less privileged. To me, as he narrated, it was about defeating death and paying back for the loss. “I have decided to be grateful for what I have learned from being Everett and Austin’s father. I learned a lot about being a better father. I feel like I have a lot to give to help others going through this dreadful disease—both to suffering children as well as helping parents that are in the shoes that I was in,” Tim said.