Five years ago, Ashlee and Gavin Senn of Howard City, gave birth to a beautiful baby girl named Lauren.
Shortly following Lauren’s arrival, along came little brother Breylon.
“When Breylon was born, he seemed very healthy. When he was six months old he was hospitalized for what they thought was gastroenteritis at an outlying hospital.” Ashlee said.
Due to a medical error, she added that Breylon quit breathing and had to been rushed to Helen DeVos Children’s Hospital in Grand Rapids.
“There they found out he was having seizures there were some other things going on, he began to fall behind in his development. “ she stated.
It started off as neurological, but as he got older, more organs became affected.
“By the time he was one and a half his respiratory system and his GI system were both affected.” Ashlee said.
At the age of 18 months, he was diagnosed with Mitochondrial Disease; it was genetic.
Mitochondrial Disease is an energy deficiency where cells do not work properly. Therefore, the Mitochondria of the cells begin to fail; as they fail, so do the organs, Ashlee explained.
There are hundreds of forms of Mitochondria Disease, she added.
“When he was 2, he had a feeding tube placed because it wasn’t safe for him to eat by mouth anymore, he was aspirating and causing lung damage.” Ashlee stated.
At 2 1/2 years-old, he had complete intestinal failure. At the age of 4, he requires an intravenous line 24 hours a day to get his protein and nutrients; he does not eat through his mouth.
“Children like Breylon, because they are considered neurodegenerative, don’t qualify for an organ transplant.” Ashlee explained.
The family has spent many holidays, birthdays and even anniversaries in the hospital. Breylon, averages more than 11 hospital stays per year.
“This past year we started the Breylon Senn Research Fund, which the last three years, we’ve always raised money, donated directly to the United Mitochondrial Disease Foundation, also known as UMDF.” The young mom explained, “We teamed up with them and created the Breylon Senn Research Fund so that way the money that we raised went to the UMDF still, but Gavin and I got to decide how it was utilized.”
When Breylon turned 3, the Senn’s found out they were expecting again. The chance of that child, little Brynlee, having “Mito” as they call it was 25 percent. Doctors noticed that their unborn baby girl, was showing some signs of growth issues.
Brynlee continues to show some signs of growth issues along with failure to thrive and she has metabolic issues, Ashlee said.
They fear she too, has the same disorder.
“I recently traveled to Washington D.C. to go to the United Mitochondrial Disease Foundation symposium and I met a world renowned doctor there who agreed to fit our kids into her schedule.” Ashlee said with a smile.
The physician, Dr. Kendall, graciously penciled them in for August 28; the couple accepting, knowing that money would be an issue, but they would find a way. It is $450 a piece, just to see the two children and add other expenses on top of that, at the minimum; the Senn’s need at least $1,500.
For Brynlee, “The earlier a metabolic disorder is diagnosed the better the outcome can be.” Ashlee said.
Unfortunately, the Atlanta office does not take their insurance, so everything is out of pocket.
“She is one of the few leading experts in the field, so she can better help our team here at Helen DeVos Children’s Hospital by writing protocols on how to manage their care.” She said. “She has the leading clinical trials at her disposal, so, if he met qualifications, she can get him into a clinical trial that could extend his life.”
For Brynlee, it would allow them to look at getting proper diagnostic material that isn’t available because it is such a sub-specialty.
Friends and family encouraged the couple to accept much needed donations through http://www.giveforward.com/breybrynsatlantamitotrip.
“We take day by day, we don’t look ahead, the only thing we look ahead on is appointments and that, but every day is a new day.” Gavin said.
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