NBC Nightly News Coming to Manchester! – Will Film Lilly Diuble in Fair Parade on Tuesday
Our courageous and much honored sixth-grader, Lillian Diuble, will be featured in a future (as yet unspecified) episode of NBC Nightly News with Brian Williams. The camera crew will follow Ms. Diuble through her daily activities on Tuesday, and that will likely include her playing the flute as she rides with her middle school band during the 70th Annual Manchester Community Fair Parade at 6:30pm.
According to Mrs. Angela Diuble, her daughter is both excited and nervous. “Of course, she’s enjoying her 15 minutes of fame,” Mrs. Diuble said of her daughter, “but she understands that by next year no one (aside from those of us in Manchester) will even remember her name. Her goal and our goal is the same. We need to raise money so that the scientists can find a cure for this disease and others like it.”
Lilly Diuble, who is losing both her sight and her hearing due to Usher Syndrome (learn more about the disease here; read more coverage about Lilly here), has been widely honored for raising close to $100,000 to fight blindness. She and her family have been adamant that they will not merely accept the disease, though doctors have repeatedly told them there is little hope in preserving Lilly’s vision or hearing. But even this burden, for Mrs. Diuble, has a blessing that comes with it.
“We are so thankful to be getting the word out about Foundation Fighting Blindness and all the great work that they do!” Mrs. Diuble told The Mirror. “I bet you’ve never heard about Usher Syndrome until you heard about Lilly. We can only hope that people that hear about it will want to help too!”
Because of how visible Lilly has been, she has been able to marshall the goodwill and the charitable dollars of Manchester children and families. Participating in the FFB Vision Walk each year has been the core of Lilly’s fundraising work. Every dollar she can raise can help groups like the FFB “drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa (RP), macular degeneration, Usher syndrome, and the entire spectrum of retinal degenerative diseases.”
Mrs. Diuble is firmly committed and believes progress can be made. “It is amazing to me that in this day and age, we have CHILDREN that could go blind,” she noted with disbelief. “We can orbit the earth or fly to the moon, but we can’t save my daughter’s sight? That. Has. Got. To. Change. No way. I do not accept it. We are raising money so that the researchers CAN do their work and find a cure for this terrible, terrible disease. Before it’s too late.”
As for the people of Manchester, the Diuble family has nothing but gratitude. Mrs. Diuble said: “It is important for everyone in Manchester to know that the entire Diuble family thanks them. Without all of you, we couldn’t have raised this money, Lillian wouldn’t have won this lovely award from Prudential and we couldn’t be making the difference that we are making. We are truly honored to be part of such a wonderful town with such great, caring and positive people. We are proud to be getting national attention for Manchester, our schools, and all of the people that live here. We are excited to be part of such a positive story for our awesome little town!”
You can find all of the people who are walking with Lilly here, and you can give them money in support of their cause until June 30th. (UPDATE: Mrs. Diuble notes: “I should mention that people can donate year round, but that after June 30, the money will be applied to 2015 totals.”)
In addition to riding in the float during the evening, Lilly and her sister Abby will travel to the Ann Arbor Library with their Leo’s Club, the junior division of the Lion’s Club. There they will explore an exhibit about the 19th Century Activist and Author Helen Keller.
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