Washingtonville benefit aims to help resident get moving again
WASHINGTONVILLE – Trish Chamberlain was moving through life like always.
A young married woman studying hard toward her education degree at Kent State University in 2009.
Her illness struck from out of the blue.
Her mother, Traci Gudat, said the change was like hitting a light switch and whatever it was progressed rapidly into multiple trips to the hospital “and taking over her life.”
Trish is married to Justin Chamberlain and is the daughter-in-law of Blaine and Terri Chamberlain, and her father is Brian Gudat.
Everything was put on hold.
The disease took control of her life and any semblance of meaning to future dreams, like standing in front of classrooms full of kids, all but disappeared.
She was suffering from a disease that occurs in one out of every 2,500 people with symptoms similar to a number of other well-known diseases, so it took a while for the medical community to figure it out but she was eventually diagnosed with Mitochondria disease.
Her mother said she got it about the time swine flu was going around.
According to mitochondrialdiseases.org one in 2,500 people have the disease which uses a “power plant” anology to describe the disease: Mitochondrial disease or dysfunction is an energy production problem.
Almost all cells in the body have mitochondria, which are tiny “power plants” that produce a body’s essential energy.
The organization says, “It can look like any number of better known diseases: Autism, Parkinson’s, Alzheimer’s, Lou Gehrig’s disease, muscular dystrophy and, chronic fatigue.”
It explained that each cell provides energy to a large community with each part of the community requiring varying degrees of power; in the same way, mitochondria provide energy to various organs of the body.
“So, when there is a mitochondrial dysfunction, a ‘black out’ looks like Leigh’s Disease, severe and fatal, while a ‘brown out’ might be severe, but not lethal.”
According to the United Mitochondrial Disease Foundation (umdf.org), “Mitochondria are responsible for creating more than 90 percent of the energy needed by the body to sustain life and support growth.
“When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised.
“The disease primarily affects children, but adult onset is becoming more and more common.”
At 25, Chamberlain, a lifelong area resident with her parents, became one of those adults and has been forced to suffer through multi-system shutdowns and surgeries.
The shutdowns can be life threatening and may consist of organs, fine/gross motor skill’s problems and nervous system issues.
Gudat called the disease “vicious” and pointed out there is no cure and it can only be managed with experimental vitamins, which are not covered through insurance.
Gudat said, “On a good day, around the house, she depends on her walker but only for very short distances and time periods.
“Getting out of the house is a very tiring task for Trish unless using her wheelchair.”
Chamberlain needs a van with a wheelchair lift so she can get out and enjoy her life, Gudat said.
To help with that, a spaghetti dinner benefit is scheduled for 12:30 p.m. to 5:30 p.m. May 12 (Mother’s Day) at the Washingtonville VFW, 575 South County Road.
There will be a Chinese Auction and 50/50 Raffle. The admission price is $10 for adults and children from 3 to 10-years-old are three dollars.
Pre-sale tickets are available by contacting: Traci Gudat: 330-692-1877; Shelly Moore: 330-831-5578 or Gretchen Kalinay 330-501-4329.
Chamberlain’s family and friends, who are holding the benefit, are asking for donations for the Chinese auction and/or the pasta dinner.
Gudat said, “We are hoping this benefit can help Trish out with her mounting medical expenses and need for a wheelchair accessible van.
“Trish deals emotionally and physically every day, knowing her disease will progress with no cure in sight. The love of family and friends as well as her faith get her through her good days as well as the challenging days. It is hard for her to get out and enjoy life without some type of transportation for her and her wheelchair.”
Gudat explained that before being diagnosed, Chamberlain experienced several compounding conditions which were treated, but her body continued to deteriorate.
“After multiple doctors and hospital stays locally, Trish was sent to University Hospital in Cleveland, she saw several doctors and still no diagnosis was made.
They continued to treat her symptoms, but to no avail.
During this time her body began to develop issues by not producing enough energy, making her body unable to keep up her daily tasks.
“On a good day Trish is able to utilize a walker for short distances. If she leaves her home though, she needs her wheelchair,” her mother said.
It wasn’t until late 2011, when a new team of doctors at the Cleveland Clinic diagnosed her with a mitochondria disease.
Organizers have asked merchants and businesses for gift certificates or items to fill gift baskets and Gudat said, “It would be greatly appreciated along and any monetary donations or items for the dinner are also welcomed.”
Anything donated will be picked up.
Larry Shields can be reached at firstname.lastname@example.org