“To the Pompe community and my Pompe friends, I say, do not give up. Don't give in.”

Over the years, we have had the privilege of meeting and befriending some incredible people and their families. Though sadly, we’ve had to say goodbye to many of them due to complications arising from their diagnoses. We first met Mike in 2013, a couple years after he had returned home from the hospital and his life had stabilized a bit. In 2007, he had gone to the ER complaining of shortness of breath, but wound up with a rare diagnosis, a tracheoscopy and a major fight for his life.
It would be four years and seven months until he was cleared to go home. Mike was the first adult with Pompe to ever have a diaphragmatic pacemaker installed in his chest, allowing him to live independently from the need of constant ventilation. Pompe weakens muscles over time, and inevitably it begins to affect the lungs. This photo prominently displays the ventilator which Mike used while he worked from his home office, often with a lava lamp bubbling and classic rock playing in the background.
Behind him, on the wall, hangs a portrait that Levi took nearly ten years prior, upon first meeting Mike. Doing advocacy work, including telling his story and encouraging others to live their best life, was very important to Mike, although he was never one to take things too seriously. His laughter and jocular mannerisms were a constant even when he was stuck in a hospital bed for the majority of his son’s childhood. He quickly befriended his caregivers and always found ways to support Deb, his wife, and Brian, no matter how well he felt.
Getting to document Mike’s world again, during the height of the COVID pandemic, was a wonderful opportunity to get close to a light whose brightness and warmth never flickered. We are grateful for the time we’ve had with Mike and share our condolences with Deb and Brian. We hope that our work continues Mike’s legacy well into the future.