Cure Huntington's Disease — The Fred Maher's Family Journey

Articles

Huntington's Disease Dinner Is Daughter's Tribute to Father


By Bradleigh Huizinga
Published: Saturday, June 4, 2011


Melinda Maher danced with her father, Fred, who passed away due to Huntington's Disease, at one of her past Huntington's Disease Benefit Dinners. Her next annual dinner will take place from 5:30 to 9:30 p.m. Saturday, June 11, at the Bantam Fire Department in Bantam.

Bantam, CT — When 23-year-old Melinda Maher of Sherman drops something on the floor or does something clumsy, she thinks, "I might have Huntington's disease," and she wonders if it's the first sign of onset.

Meanwhile, when most people her age drop something, they think they weren't paying enough attention or didn't get enough sleep, if they think about it at all.

So noted Bonnie Hennick during a Shepaug Valley High School assembly Melinda conducted before her first Benefit for Huntington's Disease Dinner.

Now, six years later, Melinda is finalizing plans for the sixth annual Huntington's Disease — a Family Story benefit dinner, to take place from 5:30 to 9:30 p.m. Saturday, June 11, at the Bantam Fire Department, 92 Doyle Rd.

"My father was diagnosed when I was 6," said Melinda.

Her parents, Frederick and Charlotte, were very open about the disease and its affect on the Maher family, and she said it was a big help to for her and her brother to grow up knowing their dad was sick and he couldn't help it.

"I'd get embarrassed in public with him," she said, explaining that he'd often look like he was drunk because he couldn't always control his body movements. "This disease scares people," said Charlotte.

Huntington's Disease is a neurological degenerative disorder for which there is currently no cure.

People with the disease have mutations of chromosome four, where the Huntingtin protein is located.

Only one parent needs to have the mutation to pass it on, so Melinda and her brother have a 50-50 chance of protracting the disease.

The mutation gradually damages brain cells. Symptoms are different in every patient, but often include chorea, which means "dance-like" in Latin, and refers to involuntary body movements.

Early symptoms often include depression, mood swings and an inability to reason.

"Dad had no filtering system," said Melinda, explaining that he would say exactly what was on his mind.

Patients often undergo emotional changes, lack the ability to read facial expressions, and are unaware of their own symptoms. As H.D. progresses, simple intellectual tasks become more and more difficult.

In the U.S., about 30,000 people have H.D. and about 150,000 more have a 50-percent chance of developing it.

Mr. Maher passed away on August 3, 2008.

About his passing Melinda said, "I said for years that I wanted him to pass away and not have to deal with it anymore, but I said that not realizing how hard it would be."

Nothing could have prepared her and her family for what it would be like to finally loose him, and Melinda admitted that they fought all the time.

But the whole experience continues to draw them together, as evidenced by Melinda saying, "My brother is like my best friend."

Both brother and sister have struggled with the possibility of developing H.D. Eric, 28, tested negative for the disease last year, and since then has felt more free to become a more active advocate and encourage others with the disease.

Though Melinda knows her brother's diagnosis has no bearing on her own, she understandably feels that it increases the probability of her developing the disease.

While her dad was the inspiration for the fundraisers, she said, "I also do this for my brother and me," adding, "I want to be a mom someday."

Melinda said that in eighth grade, "I started to get really frustrated because there were so many cancer walks and Relay-for-Life events — of course good — but there was nothing for Huntington's Disease." She decided to put together baskets for clinics.

When it came time for her senior project at Shepaug Valley High School in Washington, she had to choose between early education, the field she loved enough to make her career path, or Huntington's disease. Her choice was obvious.

The first benefit dinner was the culmination of her project, and she's been doing it every year since.

She works hard to funnel as much of the proceeds as possible to finding a cure for the disease. "We try to get a reduced rate for foods."

Cabot Creamery of Vermont donated the hors d'eouvres for the upcoming event, and two representatives will serve.

The connection was made when Melinda was recognized for her community service efforts in relation to H.D., and selected as one of Cabot's Community Celebrities to go on a cruise in February to Honduras and Cozumel, Mexico.

The semi-formal sit-down dinner will be prepared by Bill Hunniford, co-owner of American Pie in Sherman, and will include salad, a chicken dish, vegetables and a potato dish. Melinda's brother Eric recruited a number of his friends to help him out in the kitchen.

Desserts will be "a little of everything," according to Melinda, with an assortment of cupcakes, cookies, a chocolate fountain and more, some home-made and some provided by the Sugar Hoot in New Milford.

The event typically amasses between 120 and 160 guests, housed in the Bantam Firehouse, which gives Melinda a reduced rate for the event.

Besides the dinner, a Chinese and a silent auction, as well as a 50/50 raffle, will take place. In the past, between 50 and 60 baskets have been offered at the Chinese auction.

Local businesses who have contributed donations to the auctions and raffle include a branch of the Red Hat Society, Quassy Amusement Park in Middlebury, Mohawk Mountain in Cornwall, Lake Compounce in Bristol and the First and Ten in New Milford.

Sponsorships were also provided, including one from the Savings Bank of Danbury, which has donated $250 every year for the past three years.

"We've been lucky with a lot of the connections we have," Melinda said, detailing the many people who come together to make the dinners possible, including a videographer, photographer and D.J., who all contribute their time and effort.

The event will recognize the Stietzel family, who have cooked for the past five years, and the Lantze family, who have been kitchen staff for the past five years.

As in the past years, Melinda will show a video to give dinner guests a better idea of the disease and discuss H.D. and those affected by it.

This year, Melinda hopes to have more people attend who are affected by the disease to offer them the encouragement and support it gave her father. "Dad lived for it — he loved it so much," she said.

"He was always asking, ‘When's the dinner?' ‘When's my party?'"

"I'm really proud of her. She's doing a good thing," Charlotte said of her daughter.

Melinda doesn't know what it's like to live without the looming question of whether or not she will develop the disease, but she's doing everything in her power for others to not have to face that question. "We want to do this until there is a cure," she concluded.

 

Tickets are $30 or $10 for children younger than 10 years old. Those seeking additional information or wishing to reserve tickets may call Melinda Maher at 203-241-9216, or e-mail curehd2006@aol.com. Those unable to attend the dinner but wishing to donate may visit www.firstgiving.com/hdsa-ct/Event/MaherBenefit.