If Alex had one purpose in life it was to share his love for God, music and laughter with anyone he could. Alexander (Alex) Brent Schumacher was born on April 7, 2003. About a year and half later he was diagnosed with the mitochondrial disease called MELAS. Mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes (MELAS) is a condition that affects many of the body’s systems, particularly the brain and nervous system (encephalo-) and muscles (myopathy).
From day one he struggled with heart issues, muscle weakness and pain, migraines, loss of appetite, vomiting, hearing loss, and extreme tiredness to name a few. Over the years, Alex never gave in to MELAS, and defined his life with love, happiness and laughter. On October 4, 2014 Alex received his angel wings, like so many others with mitochondrial disease.
Alex’s uncle best describes him:
“With all of Alex’s tribulations, he seemed to me to be one of the happiest, well-adjusted little men I’ve ever had the pleasure to spend time with. I saw it in his eyes always. In return he passed his love on to everyone he met.
Alex was the sweetest boy, always smiling. He had such a warm heart. Holding hands is one of the many things I will remember of Alex. His hand outstretched asking for a hand to hold. How often I would take his hand, help him up a few steps. Take his hand to walk to the fire pit and roast some marshmallows around a campfire. All those times taking Alex’s hand when I felt he needed to be steadied. Interesting in thinking of those moments now. I think how much holding his hand helped to put us all on steady ground.
Teaching us, reminding us, what is important in life. I would never hesitate to pick up Alex and give him a hug. Never hesitate to kiss him. Never hesitate to whisper in his ear that I loved him. I saw everyone close to him do the same. Think if we treated everyone the same way we treated Alex and we reciprocated the same love back the way Alex did for each of us.
It’s a gift he’s given all of us, to awaken in us how to treat the ones we love. Never to be shy to give a hug, steal a kiss, or simply hold someone’s hand just because they’re in arms reach.
Alex is our reminder that tomorrow is never a guarantee. I’m going to try my best to remember that, for him.
He taught us there should be no preconceived ideas of what people are, simply by their unfamiliarity to us. To Alex, everyone was simply a potential new friend! He was a mix of resiliency, toughness driven by love that we should all hope to be. I don’t think of limitations when I think of Alex. For me, Alex will forever be, and I’m certain right at this very moment, a happy, cheerful, exuberant eleven year old. His gift of what childhood innocence is will forever be etched in each of our hearts and memories.”
The United Mitochondrial Disease Foundation (UMDF) was formed by families affected by mitochondrial disease. The Foundation provides support to families and funds mitochondrial disease research. Since 1996, the UMDF has funded more than $11 million in research projects aimed at finding better treatments for mitochondrial diseases, with the ultimate goal of a cure. This research has increased the understanding of mitochondrial function, improved diagnosis and moved us closer to treatments and, ultimately, a cure for those who face this devastating disease.
Mitochondria produce more than 90 percent of the body’s energy. When these tiny parts of the cell can’t do their job, the body doesn’t get the energy it needs, resulting in a wide range of debilitating and sometimes fatal symptoms. Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10. Each year, 1,000 to 4,000 children in the United States are born with a mitochondrial disease. While exact numbers of children and adults suffering from mitochondrial disease are hard to determine, we now know the disease is approaching the frequency of childhood cancers. Many people who suffer from mitochondrial disease are frequently misdiagnosed due to a lack of specialists. This is why we need your support.
There is currently no cure for mitochondrial disease. Alex was the most engaging and joyful little boy you could ever hope to meet. His time on this earth was much too short. In that time he affected every one that he met and he continues to affect people even now after he is gone. The light in his eyes and the joy on his face are evident, even in his pictures.
Through research, the medical world will one day have the resources to help children like Alex win the battle against mitochondrial disease. Be a part of the future, please help the Schumacher family and UMDF “redefine hope” for everyone affected by mitochondrial disease through a donation to the Angel Alex Schumacher Research Fund.
We need more research to find a cure. It’s our time to give back, what so many of our loved ones with mitochondrial disease have given us. Love and Hope!
We thank you for your love and support,
The Schumacher Family