Immeasurable Hope and Strength

When I think about my uncle David I think about all of the fond memories we shared. He had a huge heart, he was thoughtful beyond measure, he had a child like wonder, and appreciated everything afforded him, no matter how small. He also had immeasurable hope and strength.  I’ll never forget our family trips to Disney together and how much he loved The Great Movie Ride. He loved holidays, particularly Christmas. He was such a generous uncle, son, and brother. He searched for the perfect gifts and loved seeing the smiles on people’s faces when they opened them. He also loved to cook and bake and had gone to Johnson and Wales to study it. He taught me how to make peanut butter sauce for ice cream sundaes and I’ve never forgotten the recipe. He loved talking about the books he was reading and particularly loved the Harry Potter series. He enjoyed going on social media to interact with friends and family especially when he wasn’t able to go out much any longer. He had a strong religious faith and enjoyed going to church and seeing his friends. He studied genealogy and often went to the Mormon Church library to research the subject. He contributed significantly to the development of our family tree. David had a heart of gold and will not be forgotten.

David suffered from a neuro-muscular disease which effected him systemically. We later learned that that disease was Glycogen Storage Disease, specifically Pompe disease.  “Pompe disease is a rare, multisystemic, hereditary disease, which is caused by ‘pathogenic variations’ (abnormalities / mutations) in the ‘GAA gene’. The GAA gene contains the genetic information for the production and function of a protein called ‘acid alpha-glucosidase’ (GAA). Shortage of this protein hampers the degradation of a complex sugar named ‘glycogen’ into a simple sugar named ‘glucose’. Therefore, glycogen starts to accumulate in all kinds of tissues, but primarily in skeletal muscle, smooth muscle and cardiac muscle, where it causes damage to tissue structure and function.” (https://rarediseases.org/rare-diseases/pompe-disease/). At the age of 58, David was told by his pulmonary doctor that there was no longer anything that could be done and he was to return home in the care of hospice. David remained hopeful and on that day said “I think I’ll live to 65”. He had incredible strength and perseverance throughout both his illness and his remaining weeks in hospice care. He enjoyed having hospice come and visit with him. He always found the sunshine behind even the darkest cloud. Eventually, the CO2 gases in his body built to toxic levels and he was unable to filter them out

On his last day, we sat by his side and played his favorite music on his Bose CD player. David was a huge music lover and I like to think this brought him some peace in his final hours. He passed with his entire family surrounding him.  The Mormon Church helped our family through the difficult days following his passing and he had a service that I like to think would have brought him happiness.  The past several years without him have been difficult but I’d say we can all agree he is now without pain and in a better place. I will never forget any of the fond memories I have and will never forget this man who was always brimming with hope even when the times seemed hopeless. He truly was an inspiration to me and I hope sharing his story will inspire others.