Five-year-old Lucas Cianci watched Town of Smithtown officials plant a rose bush in front of town hall May 10. He could watch, but he wasn’t allowed to go touch it or play in the dirt. Lucas knew the reason why –he has been diagnosed with cystic fibrosis.
“Cystic fibrosis is extremely germ driven, even by bacteria contracted in water and soil, which really is everywhere,” Lucas’ grandmother, Debbi Haupert of Smithtown, said. “[Lucas] knows he’s different. He knows he’s restricted from doing things that other children do.”
Cystic fibrosis is caused by a genetic mutation that causes a thick buildup of mucus in the lungs, pancreas and other organs. The mucus traps bacteria inside the organs which leads to infections and extensive lung damage.
Smithtown town officials pledged May 10 to plant 65 rose bushes in the upcoming weeks in honor of National Cystic Fibrosis Awareness Month this May with the help of several local civic and community groups.
The story behind the 65 Roses Project dates back to 1965 when 4-year-old Ricky Weiss, who when he first diagnosed with the disease could not say cystic fibrosis, but called it by the closest approximately he could “65 Roses.”
Supervisor Ed Wehrheim (R) also gave Lucas a bag of superhero toys with a Kindle Fire so he can read books without having to pick up books that might have bacteria on them. When Lucas opened the Kindle, there was a personal message on it calling him a superhero.
“You know who else have genetic mutations? Superheroes,” Wehrheim said to Lucas. “You’re our superhero.”
Every day Lucas, a Merrick resident, has to go for airway clearance treatments that can last 20 to 30 minutes at a time. As people with cystic fibrosis get older, the treatment can take as long as four hours.
“You know who else have genetic mutations? Superheroes. You’re our superhero.”
“It’s a progressive disease, so as the years go by the need for additional treatments increases,” Lucas’ mother Emily said. “Right now, it’s not overwhelming for us, but it’s hard. It’s hard telling [Lucas] to sit still during treatment – he’s just a kid.”
Approximately one out of every 31 people in the United States are carriers for cystic fibrosis, according to the nonprofit Cystic Fibrosis Foundation. If both parents are carriers, there is a 25 percent chance the child will be born with the disease.
Lucas’ mother, Emily Ciano, a graduate of Smithtown High School, said that before she became pregnant she could not imaginethat she or her husband, James, were both carriers for cystic fibrosis.
“I was blindsided with it while I was already pregnant with Lucas,” she said. “It’s overwhelming to find out this information when you could have found out before hand with a simple blood test.”
She expressed how important it is for prospective parents to get tested for being cystic fibrosis carriers before they make any decision. The American Academy of Obstetricians and Gynecologists recommends that doctors offer pre-pregnancy screenings to all women.
Ciano said she has marveled at the strides that researchers have made in treating cystic fibrosis, and is optimistic that by the time her son needs more extensive treatment that there will be more options offer to help him.
Many area community organizations have pledged to help spread awareness of cystic fibrosis by joining the town in its 65 roses project. Local leaders including Rob Cartelli, of the Smithtown Chamber of Commerce; Tony Tanzi, president of the Kings Park chamber; Vincent Puleo, of the Nesconset chamber; and Kerry Maher-Weisse, Bill Capurso and Mario Mattera of the Community Association of Greater St. James have all made commitments to planting rose bushes at various plazas and parks in their respective hamlets. Bob Souto and Marie Gruick volunteered the assistance of the Nesconset Civic Association to help with the planting.
Smithtown residents who wish to be part of the 65 Roses project are encouraged to post photos of roses they plant in their yard on Twitter with the hashtag #65RosesSmithtown.