Mitochondrial disease fundraiser Sept. 29 in Howard City

By Elisabeth Waldon • Last Updated 10:23 pm on Friday, September 21, 2012

he Senn family of Howard City includes parents Gavin and Ashley, 4-year-old Breylon, 5-year-old Lauren and 8-month-old Brynlee. Breylon and Brynlee have both been diagnosed with mitochondrial disease, a progressive disease with no treatment or cure. — Courtesy photo

HOWARD CITY — Gavin and Ashley Senn of Howard City didn’t know they were both carriers of a genetic disease until they married each other and had children.

Their firstborn, Lauren, 5, is a healthy child.

But Breylon, 4, was diagnosed with mitochondrial disease when he was 18 months old. He had intestinal failure at age 2 and was placed in early care hospice. He receives all his nutrition through an IV.

The Senns recently learned that their youngest child, 8-month-old Brynlee, has the disease as well.

“Mitochondrial disease is a progressive genetic disease that currently has no treatment or cure,” Ashley Senn said. “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.”

Instead of giving up all hope, the Senn family decided to fight back.

In 2010, they organized a walk in honor of Breylon to raise funds for mitochondrial disease research. About 50 people participated.

Last year, the event became a walk and run in downtown Grand Rapids and about 250 people participated.

The third annual United Mitochondrial Disease Foundation (UMDF) Breylon Senn 5K run, walk or stroll is scheduled for 9:45 a.m. Sept. 29 in Ensley Park in downtown Howard City.

“We teamed up with the United Mitochondrial Disease Foundation, as they are the only national foundation researching this disease,” Ashley Senn said. “Our community has stood behind us the whole way and we really wanted to bring the event back to our hometown. The village has just been wonderful in helping us plan this event.”

Cost for runners to participate is $15 ($20 the day of the event) and includes a T-shirt and “Fight Mito” bracelet. Cost for walkers to participate is $5 ($7.50 the day of the event) and does not include a T-shirt or bracelet. Children 16 and younger are free with a paid adult. Registration begins at 9 a.m.

Email for more information about the event or visit online for more information about fighting the disease.

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