WATERTOWN — Sitting in the studio of the Border 106.7 in the Community Broadcasters building on Wealtha Avenue Wednesday afternoon, radio personality and DJ John “Johnny” M. Spezzano spoke to his listeners during the second day of the three-day Children’s Miracle Network Radiothon.
“It is day two of the Children’s Miracle Network Radiothon — incredible things we’re doing here for local kids,” he said.
From 6 a.m. to 6 p.m., three days straight annually for the past 21 years, Mr. Spezzano, along with Lance Hale of 94 Rock WOTT, shares stories of north country families helped by Children’s Miracle Network. The goal of the program is to raise money for the organization to continue to serve families in the region.
“I think one of the greatest things about our local Children’s Miracle Network is it helps out all kids,” Mr. Spezzano said. “It could be a kid with a brain tumor, a kid who’s battling cancer, someone that was in a car accident, or got their arm caught in a hay baler — any medical crisis.”
The 21st annual Children’s Miracle Network Radiothon kicked off Wednesday and will continue through 6 p.m. today. Organizers hope to surpass the fundraising record set last year in honor of its 20th anniversary. Last year, the Children’s Miracle Network Radiothon brought in $163,400 — a record amount for the fundraiser.
This year’s Radiothon, as in years past, features inspiring and heart-wrenching stories of children from the tri-county area who have been helped by the Children’s Miracle Network.
Funds raised, which stay local, are used to purchase advanced life-saving medical equipment needed to care for children at Samaritan Medical Center and to support capital projects like the Center for Women and Children. Additionally, Children’s Miracle Network of Northern New York offers a Direct Family Assistance Program to families in Jefferson, Lewis and St. Lawrence counties who have a child facing a medical crisis.
One such family was that of young Natalie Grace Gondek, known locally as “Natalie the Brave.”
“We are so grateful for CMN as we never knew this type of program existed until we needed them,” said Natalie’s mother Marci L. Gondek. “They have been extremely helpful with medical bills, transportation costs and meals, they’ve helped us from the very beginning. We will always hold a special place in our hearts for our CMN family.”
Shortly before her second birthday, Natalie’s parents noticed hives turning into abnormal bruising. Unsure of what was going on, they brought her to a pediatrician and ended up receiving a diagnosis that would change their lives dramatically.
After being tested at Upstate Golisano Children’s Hospital in Syracuse, the Gondek family’s worst fear was confirmed: Natalie was diagnosed with B-Cell Acute Lymphoblastic Leukemia on March 28, 2019, and was placed in the high-risk category due to her white blood cell count.
Now 2½ years later, after completing frontline treatment and maintenance, Natalie, now 4, had her last chemotherapy infusion and lumbar puncture July 7, and her last dose of oral chemotherapy July 16. She is officially done with treatment.
Her resiliency and smile caught the eye of the Children’s Miracle network of NNY, which named her the local champion for 2021.
Every year, Children’s Miracle Network asks its member hospitals to identify a “champion” to serve as the face for the millions of children who are treated by children’s hospitals each year. This champion advocates for the charitable need of the CMN program by telling their story and explaining the impact of donations.
“Natalie being the champion, it was so great to be able to give back to CMN as they have given so much to us,” Mrs. Gondek said. “We absolutely loved going to the events to help promote CMN and we enjoyed telling our story, sharing all the wonderful things that CMN does to help local kiddos. It was such an amazing experience, we’re so happy that we were given the opportunity. Natalie especially loved giving out her autograph during the events.”
Though the family is grateful Natalie hasn’t had a relapse, the thought is never too far from their minds due to a genetic abnormality that puts her at a higher risk.
Natalie started pre-K this year, and Mrs. Gondek says she absolutely loves school.
“She really is thriving, she has so many friends,” she said. “This is huge for Natalie because through her treatment years, she would avoid any type of social interaction with others. After the second day of school, she was Miss Social Butterfly.”
Natalie has also just qualified for speech, occupational and physical therapy, which she will begin after Thanksgiving. These services will help with stuttering and speech, articulation, strength, balance and fine motor skills.
Natalie now travels to clinic every four to six weeks for blood count checks and office visits, which will continue for the next few months. She’s off all of her medications except one antibiotic that prevents a certain type of pneumonia.
Though she’s feeling well these days, her body is still recovering and she gets tired easily.
“Her body also isn’t used to all the new germs that everybody is bringing in, so she is getting sick often, but overall she’s doing well,” Mrs. Gondek said. “She’s loving her new way of life; we’re so incredibly happy for her.”
Mr. Spezzano had his dogs Chet and Winston to keep him company as he worked to raise funds this week.
Touched by the families who share their stories, Mr. Spezzano stays in touch and remains up-to-date on the milestones in the CMN kids’ lives, like going to college. One child in particular remained a large part of his life and continues to have an impact years later: Storm Wood.
Storm had muscular dystrophy and did not receive a positive prognosis when he was younger, but lived to the age of 29. He was a huge supporter of the Children’s Miracle Network until the end.
“I think Storm is the one who has helped us achieve our goals, he’s our angel,” Mr. Spezzano said. “I used to let him broadcast from home — he was a huge supporter and loved to be on the Radiothon. He sang a song and recorded it for us when he was younger, we play it on the air every year. He was such a big force in the community.”
Anyone who calls in and donates $1,000 or more during the Radiothon will be deemed a “Border Miracle Maker” and have their name put on plaque. The practice started in 2019, the year Storm died, when he donated $1,000 during the Radiothon.
This year, the Radiothon has heard various stories.
A mother who worked at a gas station was separated from her child who was at a hospital in Boston and was sent money to be able to travel.
Lowville 10-year-old Deacon Fuller collapsed at school last Friday and was rushed to the Emergency Room. His family later learned he had a brain tumor. An emergency surgery was performed Sunday to remove the tumor. His father, Steven Fuller, was on the air with Mr. Spezzano live from his son’s hospital room earlier in the week.
“Thank God he seems like he’s OK. He’s home now,” Mr. Spezzano said. “This kind of stuff happens a lot, it’s a true testament to the people who set up Children’s Miracle Network so many years ago.”
In the north country, he added, families often have to travel to access specialized care.
“It’s just a fact of life — you have to go to a children’s hospital in another town or another city,” he said. “They understood that so they made CMN work to their best interest. It fits where we are, which is incredible.”
In its first year, the Radiothon made $9,000 and Mr. Spezzano said he thought that was the most money that could be raised. Wednesday morning, the Radiothon brought in the same amount in less than two hours.
Those wishing to contribute to the effort this year can call 315-755-KIDS or text ‘BORDERKIDS’ to 51555.
“We take care of people up here,” Mr. Spezzano said. “Especially in the north country.”