Rodinos battle Huntington’s, Hold onto hope

GUILDERLAND — In the last six years, everyone in her family, save herself, has been diagnosed with Huntington’s disease, yet wife and mother Lori Rodino has remained hopeful, thanks in large part to help from the community.

“Everyone has been so generous, and so kind to me,” said Mrs. Rodino. “It just amazes me how much they want to help us out and support us.”

It was 2007 when Rachel Rodino, the youngest of Rick and Lori Rodino’s three children — the other two are Anthony and Gianna — started having seizures. After months of extensive testing, doctors discovered Rachel, who was 4 at the time, was suffering from Huntington’s disease, a genetic mutation of the fourth chromosome, which targets select groups of nerve cells, and causes them to die.

The symptoms, which can include involuntary movement, loss of coordination, slurred speech, anger, irritability, and dementia, typically manifest in middle age, however, there is a juvenile form of the disorder, which Rachel had. She died in 2010, at age 8.

The disease is genetic, and children with an affected father are more likely to develop the juvenile form; both parents were tested for the mutation after Rachel’s diagnosis, and Rick Rodino’s test came back positive.

“It made so much sense that he was the one who carried the gene,” said Mrs. Rodino this week. Her husband, she said, had been experiencing some troubling symptoms leading up to Rachel’s diagnosis, such as shaking hands, balance problems, and muscle spasms, but no one knew they were caused by a serious illness.

Rick and Lori Rodino met when they were both in the restaurant business — she was the office manager and he was the kitchen manager at a restaurant on Western Avenue — and Mrs. Rodino said they went through “many phases” after that.

They owned a small Italian restaurant off of Everett Road for several years, but, said Mrs. Rodino, when their lease on the building was up, they wanted to get out of the business, because they believed his health issues were caused by stress.

Mr. Rodino then worked at the Albany International Airport, until he was forced to stop because of his health problems; he went on disability shortly before he and Rachel were diagnosed.

Mrs. Rodino quit working to stay home and take care of Rick and Rachel full-time; Anthony and Gianna were teenagers when their sister and father found out they had Huntington’s disease.

Devastating diagnosis

Genetic testing is available to check for the enlarged gene that indicates Huntington’s disease, but labs will not test individuals under the age of 18, unless they are suffering from distinct symptoms, even if a parent has already been diagnosed.

Anthony was diagnosed in 2011, at age 19, and Gianna was diagnosed in 2012, shortly after graduating from Guilderland High School.

When Rachel was at her sickest, Mrs. Rodino called Anthony and Gianna her heroes, and said they gave her strength; it made her proud, she said, to see how well they handled everything.

At the same time, she said they had “seen two people they love go through a vast amount of physical and emotional changes.”

Now, she said this week, they are scared, because they have seen what their future might hold, but Mrs. Rodino tries to keep them positive and happy.

The disease was aggressive in Rachel, and she deteriorated to a point where she couldn’t walk, talk, eat, or see, and battled weak lungs. Caring for her, said Mrs. Rodino, was a 24-hour-a-day, seven-day-a-week job, but one she gladly took on.

Rick Rodino’s most pronounced symptoms, in the beginning, were balance problems, and anger, but the disease has progressed since Rachel’s death, and it has “really taken its toll on him,” Mrs. Rodino said.

“He is in bed all the time now,” she said. “There are times he can’t comprehend things or communicate; I have to cut his food up for him, shower him, shave him, and all that.”

In order to keep Anthony and Gianna optimistic, Mrs. Rodino said she tries to “cherish each 

day,” and she encourages each of them to continue following their life’s dreams.

Anthony is a student at Hudson Valley Community College, and he loves cartooning and drawing; he hopes to be able to attend Rensselaer Polytechnic Institute in the fall to take courses in digital artwork.

Gianna is a full-time, on-campus student at Siena College, where she is majoring in social work, and she works full-time at Best Buy.

“We have a lot of fun and laughs just being home and being together,” said Mrs. Rodino. “Gianna also takes Anthony to comedy shows, he has a couple of really good friends who take him out to the movies, and she has a really close network of friends.”

At home, they watch movies together and take a lot of family pictures.

“I know Gianna goes to visit Rachel’s grave a lot,” Mrs. Rodino said. “That is very comforting to her.”

No regrets

It is hard, she said, not knowing if or when Anthony and Gianna will develop full-blown symptoms of Huntington’s disease. Their ages make it difficult to tell if they have the juvenile or adult form of the disorder.

Losing a child, especially to a genetic disease, she said, makes you think about whether you should have had children in the first place, but, even to this day, she has no regrets.

“I didn’t know about the disease,” said Mrs. Rodino. “Each one of the children is such a blessing.”

Now, her only goals are to stay healthy herself, so she can take care of her family, and to be able to provide her children with the future she believes they deserve.

“Every day is a tough day, but, looking at them, and wanting to make sure they reach their full potential, gives me hope,” she said. “My kids give me hope; I have so much hope, and you have to have that.”

She hopes, most of all, that a cure will be found for the disease. In the meantime, she focuses on the goals she herself can reach.

Mrs. Rodino is sometimes able to work delivering newspapers early in the morning, but her ability to work is not consistent, and depends on how much help her family requires on any given day.

She is focused on keeping her family’s home, getting funding for Anthony to continue his education, and being able to purchase basic necessities, like food and clothing.

This is where the community has stepped in, she said.

In 2009, Senator Neil Breslin helped to prevent the foreclosure of the Rodinos’ home. The Guilderland Chamber of Commerce, led by Kathy Burbank, appealed to local businesses to have some of the Rodinos’ monthly bills lowered, and County Waste agreed to donate a year’s worth of rubbish removal to the family.

Friends and neighbors organized the sale of solar butterfly stake lights, in honor of Rachel, who loved butterflies, and those have been sold intermittently for the past four years.

Local restaurants have held fund-raisers, The Pioneer Savings Bank on Western Avenue set up the Rodino Family Fund, and checks or Price Chopper Cards can be donated to the chamber at 2050 Western Ave.

Two fund-raisers will be held this weekend, the first at Five Guys Burgers and Fries, on Friday, and the second at Crossgates Mall, on Saturday.

“When we decided to think about where we wanted to raise our family, I didn’t have any doubts that I wanted to live in Guilderland,” said Mrs. Rodino. “But this community, with the little bits that they do and the huge bits that they do, I am very, very grateful.

“I wish I could mention and thank everybody,” she said, “but I want people to know I appreciate everything they continue to do.

“We have little goals,” she concluded. “We’re just taking it one day at a time.”

 

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A fund-raiser will be held at Five Guys Burgers and Fries, 1512 Western Ave., to benefit the Rodino Family Fund, from 5 to 8 p.m., on Friday, June 21. 20 percent of all sales will be donated.

On Saturday, June 22, a car show will be held in the Café Court overflow lot of Crossgates Mall to benefit the Rodino family. Show cars can begin lining up at 9 a.m. Hot rods, customs, trucks, bikes, rat rods, imports, muscle cars, classics, and car-related vendors are all welcome. Trophies will be awarded to top show cars in various categories at 2 p.m. Goody bags will be handed out to the first 50 cars. The cost is $10 per car or bike. There will be a drawing and music.

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