HOWARD CITY — Breylon Senn may have lost his battle, but his friends and family continue to wage a war against a rare genetic disease.
Senn died from a neurodegenerative form of mitochondrial disease in February 2013. He was only 4 years old. He was a Tri County Area Schools preschool student and loved Thomas the Train, the movie “Cars,” playing outside and trips to the beach.
Senn’s parents are Gavin and Ashlee Senn of Howard City. They didn’t know they were both carriers of the genetic disease until they married each other and had children. Their firstborn, Lauren, is healthy, but Breylon was diagnosed with the disease when he was 18 months old. He had intestinal failure at age 2 and was placed in early care hospice.
The youngest Senn child, Brynlee, now 2 years old, has also been diagnosed with mitochondrial disease, which currently has no treatment or cure. It can affect any organ and any organ can fail. One in 200 people carry the genetic marker for it and one in 4,000 people can get the disease.
The fifth annual Breylon Senn 5K run/walk/stroll will take place Saturday at Tri County High School just south of Howard City. The event originated in 2010 when the Senn family organized a walk in honor of Breylon. The event has continued to attract an increased number of participants each year.
Ashlee Senn said she is continually overwhelmed with gratitude at how the Tri County community supports her family’s fight against the disease.
“For the second year in a row, Tri County Area Schools is hosting a districtwide Green Week which will be leading up to the 5K,” she said. “Students will be working to obtain pledges towards running/walking in the 5K. They will also be educated on what mitochondrial disease is and, of course, who Breylon was.
“Also for the second year in a row, the Tri County High School track teams have taken on this worthy cause to help us share Breylon’s legacy as well as fund raise,” she added. “These student athletes will be selling merchandise to raise funds, they will be educating and encouraging their fellow student to come take part in the event as well.”
Thanks to the support of Tri County Area Schools and the Panhandle community, more than $10,000 was raised to donate to the United Mitochondrial Disease Foundation.
“I think it is absolutely amazing to see these young children showing so much love and willingness to help us make a difference,” Ashlee Senn said.
Breylon Senn’s aunt Amanda Kinsey said the goal of Saturday’s event is to raise awareness about the disease, as well as to raise funds to help find a cure for Breylon’s little sister and everyone else who has the disease.
“Last year, we had over 500 runners and walkers and we anticipate an even larger turnout this year,” Kinsey said.
Call Kinsey at (616) 663-0787 for more information about Saturday’s event.