Howard City boy succumbs to rare genetic disease

By Darrin Clark • Last Updated 11:47 pm on Friday, February 15, 2013

HOWARD CITY — A Howard City boy has lost his fight with a rare genetic disease.

Breylon Senn, age 4, died at home Friday after battling mitochondrial disease. He is the son of Gavin and Ashlee Senn of Howard City.

“Our brave little Breylon is free … free of pain, free of suffering, free of mitochondrial disease,” Ashlee Senn posted on her Facebook page. “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 4 years old he had the spirit and grace far beyond his years. I am so forever blessed God gave him to Gavin and I, I just wish it would have been longer,” Ashlee Senn concluded.

Gavin and Ashlee Senn didn’t know they were both carriers of a genetic disease until they married each other and had children.

Their firstborn, Lauren, is a healthy child. But Breylon 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 received all his nutrition through an IV.

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

Mitochondrial disease is a progressive genetic disease that 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.

Instead of giving up 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.

In 2011, 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 took place last September in downtown Howard City.

Breylon was a student in the special education preschool program at Tri County Area Schools. He loved Thomas the Train, Dora the Explorer, the movie “Cars,” music, playing outside, trips to the beach and a special trip to the ocean.

Breylon is survived by his parents, his sisters, Lauren and Brynlee, and many relatives.

Visitation will be from 2 to 5 p.m. Sunday at Hurst Funeral Home in Greenville. Funeral and committal services will be Monday at 11 a.m. the Trinity Evangelical Free Church in Stanton.

Memorial contributions are suggested to The Breylon Senn Research Fund in partnership with the United Mitochondrial Disease Foundation.

Hurst Funeral Home in Greenville is in charge of funeral arrangements.

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