YARMOUTH — By the time she is done, Debbie Godowsky will know the long and short of every public road in town.
“When you run the same route, it gets boring,” Godowsky, 60, said last week.
Her runs are not dull, and will also help fund research into a genetic condition that affects her 13-month-old granddaughter, Maren Ouellette.
Maren was diagnosed with glycogen storage disease less than two months ago, at about the same time Godowsky was taking up running.
According to the Association for Glycogen Storage Disease, the disease is a metabolic disorder where there is a lack of the enzyme needed to store or breakdown glycogen, the complex chains of glucose needed for energy.
Glycogen is usually found in the liver and muscle cells. Maren has been diagnosed with Type-III, sometimes called Cori Disease or Forbes Disease, said her mother, Katie Ouellette of West Roxbury, Mass.
“She’s been awesome, she has been a fighter since birth,” Ouellette said about her daughter, who was born two months premature.
Ouellette said the diagnosis came after a flu bug hit the family and her daughter’s liver remained enlarged about two weeks later.
It was a quick, frightening diagnosis – some symptoms may have been masked because Maren was born prematurely. Low sugar levels were causing hypoglycemia, Ouellette said, but it was hard to know anything was amiss.
“What’s scariest was realizing your baby could have been having a seizure. She couldn’t tell us what was going on,” Ouellette said.
Just after her diagnosis, Ouellette said she and her husband, Evan Ouellette, fed Maren eight times a day.
“You wake a child out of a dead sleep and put a bottle in front of her, she isn’t having any of it,” Ouellette said.
They used tubes for night feedings, and now rely on feeding Maren raw cornstarch because it breaks down slowly enough to prevent hypoglycemia.
“Right now, our understanding is she’ll be having cornstarch mixed in with food for life,” Ouellette said.
She said they are already seeing positive results. The Ouellettes have also had their son Avery, 2, tested for the disease, because it is genetic.
A native of Yarmouth, Ouellette said she is not surprised her mother is fundraising with her feet.
“I thought it was awesome. She is probably the most goal-oriented person I know. She needs some kind of motivation and sets goals for whatever she does,” Ouellette said.
Godowsky has picked up 149 sponsors who are contributing on a per mile or flat rate basis to AGSD research. She said she initially asked friends and family to donate 20 cents per mile for the 77 miles of town roads.
By asking for a little, Godowsky said she has received much more. Social networking has boosted the number of sponsors, and many are contributing more than the $15.40 that would be earned by pledging 20 cents per mile.
Godowsky expects to raise at least $2,300 and said she has found a way to see areas of town she had not fully explored while living here for 31 years.
“By and large, regardless of how modest or elegant the homes are, people really take pride in their homes. Lawns are tidy and cleaned of winter debris, flowers are popping up,” she said.
Godowsky, owner of the mail order company Cookies Direct, said she can run up to five miles at a time now. She tries to run every other day, and is actually running more than 77 miles because she will run to the end of a street, turn around and run back.
“I’m a fair-weather runner,” she said, but a warm, dry spring has allowed her to set a good pace in the last month. Godowsky expects to be done in July, just so she can tell her friends she is finished when she sees them at the Clam Festival.
Godowsky said she has set her own deliberate pace and usually runs alone.
“My husband, Barry, he said he just can’t run that slow,” she said.
The burgeoning list of donors includes old friends and colleagues of Ouellette’s.
“It is amazing with the network you can tap into,” Ouellette said. “Anyone who knows my mom loves my mom. She has a ton of energy.”
Debbie Godowsky plans to run along every public street in Yarmouth before the Clam Festival in July. She has logged more than 20 of the 77 road miles in town and expects to raise at least $2,300 for research into glycogen storage disease, a genetic condition that affects her granddaughter.
“I’m a fair-weather runner,” Debbie Godowsky admitted before running along Pleasant Street in Yarmouth last week. The novice runner will run every public road in town to raise money for research into the medical condition that affects her granddaughter.
Maren Ouellette, the granddaughter of Yarmouth resident Debbie Godowsky, has been diagnosed with a genetic disorder called glycogen storage disease.