FOX 17 has followed the courageous story of Breylon Senn and his family for the past year. The disease also affects his 1 year-old sister Brynlee. In the United States, about one out of 4,000 people have ‘Mito’.
Brey was diagnosed with the disease while in his infancy. Most commonly known as ‘Mito’, it occurs when the mitochondria of cells fail to produce energy for organ function; leading to organ failure. It was around the age of 2 when Brey could no longer eat by mouth and required a gastrostomy tube for nutrition. Most of his life was spent with numerous trips to Helen DeVos Children’s Hospital in Grand Rapids.
Back in August, the community rallied, raising funds for the Senn Family to see a specialist in Atlanta. While they knew the outlook would most likely be the same for Brey, they were hopeful to slow down the process for little Brynlee.
Through their own fight, the family has set up the Breylon Senn Research Fund through the United Mitochondrial Disease Foundation, designated donations to research involving various aspects of the disease. Every year the family also holds a 5K for the foundation.
Brey’s mother, Ashlee Senn, posted this message on her Facebook page:
“Our brave little Breylon is free.. Free of pain, free of suffering, free of mitochondrial disease. Our hearts are broken, our world shattered. But if there is one thing we can learn from Breylon, it is to be strong. Find strength we didn’t know we had. He will leave a legacy of lives he has touched, changed and transformed. At just four years old he had the spirit and grace far beyond his years. I am so forever blessed God gave him to Gavin & I, I just wish it would have been longer.”