WILLSBORO-Since October of last year, Alex Bliss has been at her grandfather's side.
She will check his medicine, make sure that he is comfortable and keep his spirits up.
That's because her grandfather, Lawrence Bliss Jr., a former New York State Trooper and member of the Bureau of Criminal Investigation (BCI), was diagnosed with Amyotrophic lateral sclerosis (ALS, Lou Gehrig's Disease), a progressive neurodegenerative disease.
"It has changed my whole outlook on life," Bliss said after receiving a community service award June 21 from her Girl Scout troop for the work she had done for the grandfather. "I had no idea what ALS was before he was diagnosed, and I had no idea what it could do to someone until I see him now."
"I am just so proud of her," Alex's mother, Laura, and oldest of the three Bliss children, said. "Nobody had to ask her to do any of what she has done, she just jumped right on it."
In presenting the award, scout leaders read a statement that was written, in part, by Lawrence, who presented the service award to her.
"Giving up her social time with friends to focus on him, she did everything from helping to administer medicines to counting calories to help him with his meals," the statement read. "Reacting far beyond her 11 years, Alex rallied and took it upon herself to become his personal nurse, or his, 'RN,' as 'Papa' likes to call her."
"She has been amazing," said Melanie Bliss-Hall, the youngest of the daughters. "She is a great kid and they share a very special bond together through this."
"I think that it is wonderful," Sarah Bliss, the middle daughter, said. "It was so emotional, and I was proud that he was able to do that for her."
Bliss-Hall said that, like other families that have dealt with ALS, she has been amazed at how many cases there are in the North Country.
"There are so many people here that are affected by it," Bliss-Hall said. "People need to be aware of how prevalent it is here. There needs to be more awareness and we need to raise funds for research."
To help raise funds, the family is entering a team in the Walk to Defeat ALS in Burlington, Vt., on Sept. 25. Bliss-Hall is also serving as a trustee on the local ALS Hope Foundation.
"It has been heartbreaking to see what he has been through," she said. "He had been so independent a so self-sufficient. Now, he can't even ride to mow the lawn, which used to be his pride and joy."
"Our goal is to help him maintain as much independence as we can," Sarah Bliss said. "We got him an iPad for Father's Day so he can have access to things. He loves to read the newspaper, but he can't turn the pages anymore."
"The biggest thing is dealing with the day-to-day stuff," Laura Bliss said. "The things that should be simple - that's a job within itself."
However, they are all jobs that Alex has helped out with since the diagnosis.
"I have a love for him that I didn't know was possible," she said. "I love him more every day."