Courageous Boy Battles Rare Disease – QNS.com

Courageous Boy Battles Rare Disease

With the help of community leaders, friends, family and small business owners, a fundraising dinner was held Monday night in the Sheraton LaGuardia East Hotel in honor of 16-year-old Ronny Rodriguez, who suffers from a life-threatening disease.
Progeria is an incurable and fatal premature syndrome detected in only a handful of people in the world. At the age of two, Ronny was diagnosed with the disease and at the age of just 16 (which, for Ronny, equals about 65-70 years of age) he has become the worlds oldest living person with Progeria. Most children afflicted with this disease are expected to die of heart problems after around 13 years of age.
Despite Ronnys medical condition, he is a very outgoing person who is currently attending school in his home state of Utah and also has dreams of visiting Disney World.
In 2002, Ronny and his mother, Mara, went to Utah for research sponsored by Sunshine Foundation.
During the dinner event, Ronny entered the room accompanied by his mom, who later told The Queens Courier, "[Ronny] has been a blessing for me."
"I like everything here, thank you very much to all of you," Ronny said.
After hearing his story, Sandra Reyes, a member of the board of the Latino Initiative for Better Resources and Empowerment of the Community (LIBRE), took up his case and started organizing the event, along wih the Sheraton LaGuardia, Neighborhood Housing Services of New York. Assemblyman Jose Peralta was in attendance and spoke to the crowd.
"I am here to send a message to the community, taking into account the spirit of Thanksgiving, that we have to help," Peralta said. "This is a story of courage and hope, and it is appropriate to give thanks to life."
State Senator John Sabini said, "It is very good what is happening here."
All of the proceeds from the event will go to Ronny and his mother and will be used to help cover his medical and nutritional costs. Also an account will be opened indefinitely, expecting more contributions from people to come in after the event.

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