To the Editor:

It’s been 10 years since the Guilderland community learned about the Rodino Family and their battle with Huntington’s disease. Youngest child Rachael Rodino developed the juvenile version of the disease, while at the same time father Rick was starting to have off symptoms of his own.

Rachael’s diagnosis led him to get tested and started a sad journey for this family. The neighbors had been going house to house, selling solar butterfly garden lights because they were Rachael’s favorite thing.

In 2010, Rachael passed away at age 8, and a few years later siblings Gianna and Anthony also were tested and found out they, too, had the disease. Since then, mom Lori has stayed strong and helped the whole family.

Huntington’s disease is a neurological disease passed from a parent, like ALS or Parkinson’s that affects your central nervous system and has no cure. The disease normally doesn’t surface until a person age 30 to 40 years old, which means many have families without knowing. There has been much progress made researching the disease and trying to stop it’s progression.

It has been a long road, both for the family and the community. The community has come together for 10 years now, with many organizations and businesses continually fundraising to help the Rodinos stay at home.

So many companies and individuals, sports teams and schoolteachers held fundraiser, runs, dinners, butterfly sales, and more. Lori and her family have been amazed at the support from the community.

And when people meet Lori, she has a hug, a smile, and love for everyone, and people always say the same thing, “Unlike some people, she has every right to be down, but she is the happiest person I know.”

The hardest part of this 10-year story is for those of us who continually ask our community to support the Rodino family; we feel that everyone has been so generous, but we want to keep the family at home and try and prevent Lori from having to work in addition to caretaking for her whole family.

We are having another fundraiser for them, a ziti and meatball dinner at CM Fox Real Estate at 2390 Western Ave., Guilderland on Friday, Feb. 15, from 5 to 7:30 p.m. The suggested donation is $20 and we will have butterfly lights and lapel pins for sale as well.

Those who cannot come but want to contribute can write checks to the Rodino fund at KeyBank at Star Plaza or donate online at GoFundMe, search Rodino Miracle Chain of Love.

Katherine Burbank

Community Volunteer