Blog — Beneficiary Bio

“It all started even before she was born,” says Stephanie. “I had a lot of problems prenatal, but doctors weren’t quite sure what was wrong and even after she was born, she passed all health checks.”

However, Sophie was not gaining weight and her tiny body struggled with nursing. Every time she tried to eat, Sophie could not swallow properly and would aspirate. Stephanie says at just five-weeks-old, she had immediate surgery to have a gastrostomy tube or feeding tube inserted. Through 11-months, Sophie only took in liquids through her g tube.

“Sophie was eventually diagnosed with Pallister-Hall Syndrome, an extremely rare condition with less than 100 diagnosed cases in history. There is a man diagnosed with Pallister-Hall in Australia that we have reached out to, but there really isn’t much information out there.”

Since the diagnosis, the family has asked many questions regarding Sophie’s health, but there have not been many answers. In her short and fragile life, Sophie has undergone ten surgeries and also deals with hypoglycemia, causing complications with her blood sugar, as well as a hematoma in her brain, which could eventually lead to blindness.

“My husband and I were in zombie mode when she was a baby and even now it’s extremely difficult, but we are all adapting,” Stephanie says. “One thing I can say loud and proud is that Sophie faces so many obstacles, but she adapts to them all. Her complex condition is a tough pill to swallow, but she has changed me as a person for the better.”

The family is tight knit, with Sophie having a six-year-old brother, who is also impacted by the struggles of her critical condition. The family are die-hard Buffalo sports fans and think so highly of the impact the community has in helping those in need. That’s why when they heard about a shirt drop for Sophie, they were “over the moon” thrilled to have awareness around Sophie’s journey.

“26 Shirts…Buffalo…WNY and this campaign give me hope. Sometimes it all seems like too much, but then things like this come up and I feel hopeful,” Stephanie explains.

“His personality is larger than life and in our small town, everyone knows Ralphie,” she exclaims. “He has put up a really strong fight for a very long time.”

Working as a dedicated employee of the local pizzeria, Ralphie has had the opportunity to meet almost everyone in his entire community and Lynn says that he greets everyone with a huge smile and warm personality. Along with his diehard passion for the Buffalo Bills and Buffalo Sabres, his spirit is infectious. 

“He is married to the love of his life, absolutely adores his nieces and nephews and has a stepson and grandson. Right now, they are all focusing on spending as much time together as they can while Ralphie is feeling good and has normal sparks of his personality.”

When 26 Shirts stepped in to financially support the family, Lynn admits that they are typically reluctant to accept help because there are always others who need it more. But, the expensive medical bills from the chemotherapy and trials are stacking up.

“Having this shirt in his honor is a huge blessing, and our community alone is thrilled to help Ralphie through these shirt sales.”

This story is provided in partnership with Hope Rises. Learn more at www.hoperisesnews.com.

 “A ball of energy – he loves to ski, bike, hike and just be outside,” she says.

 But when he struggled to breathe walking up a flight of stairs, she took that as a warning sign to seek urgent medical attention.

 “After an Xray of his chest, the doctor called me immediately and told us to get him to Children’s [Oishei Hospital] as fast as we could. It turns out he had a mass in his chest and they couldn’t even see his one lung.”

Finn was diagnosed with a rare form of lymphoma – a childhood cancer that requires aggressive treatment to knock down. The family spent the next three weeks in the hospital, and now return every three weeks for a five-day stay, so Finn can receive life-saving chemotherapy. So far, he has fiercely braved six rounds.

“He’s been amazing through it all,” exclaims Amanda. “The days in the hospital when he has no appetite, he knows he has to eat and drink and walk the halls to feel better. At one time, he walked 101 laps of the hospital to get his body moving and the nurses were astonished. He just keeps going and keeps all of us strong.”

When the family learned that they would benefit from a 26 Shirts launch, they were extremely humbled by the kindness of their community.

“Finn is definitely a town hero in the very small town we are from. There are ‘Finn’s Fans’ signs everywhere. From that hometown attention to this campaign, I get teary-eyed thinking of all the support for my son. It’s amazing and truly humbling.”

Krista says her son, a vibrant and kind 16-year-old, has always been active. But, in March, he was hit with a leukemia diagnosis without warning. Since that diagnosis, life has been hectic and challenging.

“He was at States competition for swimming when he got really sick,” she says. “We initially thought he had the flu, but his pediatrician didn’t feel right about his blood work, so he was sent to Golisano for testing.”

Golisano Children’s Hospital in Syracuse discovered issues with his liver caused by the cancerous cells filling his liver. Since his diagnosis, Tyler has endured weekly chemotherapy - even having to spend Christmas at the hospital due to pancreatitis. Krista recounts one moment when she didn’t know if her son would make it.

“About a month after diagnosis, Tyler went sepsis and was in the ICU. When he came out, he said, ‘Hey, I’m okay Mom…I didn’t die,’ and tried to make me feel better. That's him - always looking on the bright side." 

She says his level of maturity and positivity, even in the darkest moments, keeps her moving forward with hope. Because Tyler is still fighting to recover, Krista had to take a leave of absence from work to protect Tyler.

“It’s not safe for me to be exposed at work in this pandemic, and also take care of him,” she explains. “This 26 Shirts campaign comes at the best time for us as a family." 

Tyler is stable and in the “interim maintenance” phase of his diagnosis. What keeps him happy through it all? “The Bills! Tyler is feeling super confident and is proud of his team – he is ready for that Super Bowl win. From the very beginning, he has always believed in the Bills and cheered them on.”