LEWISTON – You can’t help but smile when you meet 3-year-old Maya Serra as she dances around like one of her favorite princesses or smiles for the camera, knowing she is the center of attention.
Her parents, Renee and Joel Serra of Lewiston, smile, too. But it is not hard to see the pain behind the smiles or hear the hitch in their voices when they talk about the terrible disease – neuroblastoma, a rare childhood cancer – that is threatening their little girl’s life.
Maya has only 50 percent chance of living through the next five years, even less if there is a relapse, Renee Serra said. The remaining cancer sits at the base of her spine and is currently inoperable, she said.
BuffaLove, a newly formed nonprofit organization founded by James Sheehan of Lewiston, has made Maya its first poster child. It is attempting to raise at least $7,500 to help the Serra family with medical and travel costs for Maya’s treatments. They are calling it Miracle for Maya.
“My husband came up with this great idea. There were all these websites out there, like Go Fund Me, that you can crowd fund for money –it’s like an online benefit, but there was nothing local, specific to Western New York,” said Stacey C. Sheehan.
She said her husband founded BuffaLove and created the BuffaLove T-shirt to allow people to show their Western New York pride in helping their neighbors and, specifically in this case, Maya and her family.
Maya, who will be turn 4 on May 24, was born into a typical Western New York family, with two energetic older brothers.
She appeared healthy at birth and was a typical infant, but around her first birthday doctors, at a routine checkup, discovered a large tumor in her abdomen. The tumor encircled her aortic artery and compromised her surrounding organs. Cancer also was found at the base of her skull, in her spine, and in both her hips and her legs.
“It encompassed everything. If you were a 175–pound adult, it would be like the size of a basketball,” said Renee Serra, a stay-at-home mom.
Neuroblastoma is cancer of the nervous system. It is so rare that only 650 cases, primarily in children, are diagnosed in the United States each year, according to children’s cancer research sites. There is no known cure.
“There is never an outlook where they can tell you she is cured. The best they can tell you is that there is no evidence in your body. We are not at that point right now,” Serra said.
She said they had no warning.
“It was hard for us to accept, because she was not a sick child. We had a completely healthy child on the outside, who was very, very different on the inside,” she said. That was in 2012. Maya was barely 13 months old.
In less than three years, Maya has been placed under anesthesia more than 150 times and has had 11 surgeries to shrink or remove parts of the tumor from her organs. She has endured numerous CT scans, MRIs, bone scans, blood transfusions, endless rounds of chemotherapy and countless needle pokes and prods.
Joel Serra, who works in law enforcement, said his little girl has remained surprisingly positive and upbeat throughout.
“She is very resilient,” he said. “She’s just happy, cheerful. She is also very advanced and she understands what is going on. She knows she has cancer and she has to get tests.”
Both parents are surprised and grateful that BuffaLove has come to their aid.
“We’re so appreciative. When someone like this shows up out of nowhere, it renews your faith in people,” Joel Serra said. “We’ve done a lot since Maya has been sick and we’ve reached out to other families, as well.”
The family sees an oncologist at Women & Children’s Hospital of Buffalo every other week and they are also back and forth to Memorial Sloan Kettering Cancer Center in Manhattan every three months.
“It’s extremely expensive to go back and forth,” Renee Serra said.
She said they are often able to use the free flight service Wings Flights of Hope, but sometimes have to fly commercial, which they try to avoid due to Maya’s weakened immune system. Once in New York, they are unable to use taxis, also due her immune system, and have to use a car service to travel from the private New Jersey airfield to the hospital – $100 or more each way. They are able to stay at the reduced rates of the Ronald McDonald House near the hospital, but that accumulates over the course of a week or in some cases as long as a month. They also need to pay for meals and transportation in the city.
“It’s a pretty decent bill by the time we are done,” she said. “Through the whole thing, we’ve tried to maintain as much normalcy as we can for the boys (who are 5 and 7).”
Stacey Sheehan, who works in marketing, and James Sheehan, who works in information technology, said they were drawn to the idea of starting a funding site after her father died of lung cancer. The Sheehans also have a 4-year-old son, Liam, who is around Maya’s age.
“I can’t imagine how difficult this is for their family. We are so happy to be able to do this,” said Stacey Sheehan. She said she still is emotional when she remembers how she tried to put her own thoughts into words when they were raising money for her father, Barry Bowers, when he was sick.
“We talked a lot about how difficult it is to put your thoughts into filling out a profile when you are deeply and emotionally impacted, and Jim thought, wouldn’t it be great if we had something like that here where we did that for them and they wouldn’t have to come up with how to word it and have to monitor it,” Stacey Sheehan said.
“He built the website and designed the T-shirts, and we were waiting to find the first beneficiary,” she said of Maya.
She said that BuffaLove, through the sales of T-shirts and merchandise as well as outright crowdfunding donations, will help to raise money for participants – and it doesn’t cost the families anything to participate.
She said that Miracle for Maya is BuffaLove’s first effort at crowdfunding platform and that it has already received other inquiries. The eventual goal, she said, is to help one new person or family every month.
“The most important thing is to raise some funds for Maya, but we also want to build a bit of a community, so once we reach our goal for Maya and identify another Western New Yorker in need, we’ll have a larger network and be able to run a campaign for someone else,” Stacey Sheehan said.
“People are inundated with requests, so we wanted to have a T-shirt as a badge of honor for Western New York and the City of Good Neighbors. You can wear it with pride. We want to sell a ton of them and see them on everybody’s backs. When someone wears one, we want to identify them as a good neighbor.”
If you would like to find out more about BuffaLove, you can “like” it on Facebook at the BuffaLove shirt. To donate to Maya’s family and buy a T-shirt, go to thebuffaloveshirt.com.
Maya’s family has posted information about them, Maya’s struggle with neuroblastoma and their own fundraisers on Facebook at Miracle4Maya.