When one of Paul Blythe’s close friends Kory Rauscher died in a snowmobile accident, Kory’s family and friends started an annual golf tournament in his honor, giving part of the proceeds to benefit the families of children born with cleft lip and palate, like Kory’s nephew Nathan. Shortly after Nathan’s birth, his parents drove from Waterloo to Eastman Institute for Oral Health in Rochester every week for three months for special treatment.
Paul met Kory when Access Midstream hired the Rauscher family business, DC Rauscher, as a contractor for a string of pipeline jobs.
“No one could hold a handle to him as far as contractors go,” said Paul about Kory. “He was pretty phenomenal. Young and smart, he learned the business from his dad. He never cut corners. His word and handshake were solid, and he earned a lot of respect in the business.”
They became close friends working long hours during an 18-month period. “Kory always had a smile on his face, and was constantly laughing and joking,” Paul added. “He was a really great guy.”
A recent move from Oregon to Pennsylvania had allowed Paul to meet some really amazing people, like Kory, and his sister Jamie and their Dad.
He also met Tricia Hughey, of Elmira, while shopping at Men’s Wearhouse where she worked. Today, he calls her ‘the best friend on the planet.’ When Tricia and her husband Michael found out they were going to have a baby after years of struggling to get pregnant, they were thrilled, and Paul would be named the baby’s Godfather.
“At the 20 week ultrasound, we were excited to find out the baby’s gender,” Tricia remembered. “The technician told me, ‘you’re having a boy, and he has a cleft lip and palate.’”
That news barely phased them. They were excited to be having a healthy baby boy, and she and Michael wanted to choose a strong name that would match the strong personality she knew he would have.
“Aiden is Irish and stands for little fire,” Tricia explained. “It’s a perfect name, because that is exactly what he is.”
Kory had never mentioned to Paul that he had a nephew who was born with cleft lip and palate, but he knew it wasn’t coincidence when his new Godson would benefit from the love of the Rauscher family in connection with Kory.
“Once we found out the Rauschers were involved in helping families with kids born with cleft lip and palate at Eastman where Aiden would be treated, it took a whole different direction for us,” Paul explained. “It was surreal. I believe it was a path God intended that brought us all together.”
One in 600 babies are born with cleft lip and palate, sometimes with a genetic component. UR Medicine’s Eastman Institute for Oral Health specializes in the NAM, a nasoalveolar device that helps the baby feed, as well as close the gap before the baby’s first surgery at around three months old. Eastman Institute is the only place outside of New York City that offers this service. Babies who wear the NAM experience less scarring and fewer surgeries.
Treating birth defects involving cleft lip, cleft palate, and other craniofacial anomalies requires the expertise of specialists from a variety of medical fields. UR Medicine has a multidisciplinary team that helps provided individualized treatment. Depending upon the child's specific needs, his or her care team may include specialists from pediatric and plastic surgery, pediatric medicine, dentistry, audiology, speech and language, and social work—just to name a few.
“We saw what my sister Mandee and her husband went through with Nathan,” explained Jamie Rauscher, Kory’s sister. “Weekly trips to Rochester and materials like special tape and bottles can get expensive. Our family wanted to help others going through a similar situation, and that’s why we chose Eastman’s cleft program when we decided to host a charity golf tournament in Kory’s honor.”
For Sara Watrous and Alex Caminiti, those funds were deeply appreciated. They didn’t know their son Felix had cleft lip and palate until he was born. After they learned about the NAM, they thought they could go through the process in Ithaca, where they live.
“We were completely shocked when we found out we had to come up to Rochester every week for three months,” Sara said. “The gas cards and validated parking provided by this fund took a huge weight off our shoulders. We are so thankful that people were concerned and cared about our experience in dealing with this whole thing. Having to take time off work, and managing the expenses were challenging, but the support we received was awesome.”
For Tricia and her husband, the emotional support provided by Dr. Erin Shope, an EIOH pediatric dentist and cleft expert, was the biggest benefit.
“That woman is the biggest blessing,” said Tricia. “The thing that I love about her is that she is very relaxed. She doesn’t think anything is not attainable, and was always so easy to talk to.”
From the first time she met Aiden, Tricia described Dr. Shope handling him so gently, while always being straightforward with her. Dr. Shope knew having the NAM would be beneficial, but she cautioned them that Aiden may not like it at first.
And she was right.
“Aiden rejected the NAM four or five times,” Tricia recalled. “He wouldn’t eat, it was really uncomfortable for him, but Dr. Shope would not stop trying. She does not have an ounce of quit in her, and she’ll keep readjusting it until it works.
“She was insanely supportive,” Tricia added. “She gave me her cell number to call anytime. I would text her a picture of his mouth, and she would let me know if it was normal or if I needed to change something. She was so great, and leveled me out when I was starting to get uneasy. She’s so patient and so good with kids.”
Paul, who has a son the same age as Aiden, accompanied Tricia on a couple of Aiden’s appointments to Eastman Institute for Oral Health. “They’ve been amazing the way they treat the kids. It’s such a great open atmosphere,” he said. “They try to make sure the parents and the kids are comfortable.”
Today, Aiden, almost 3, and Felix, 9 months, are progressing beautifully and the families are grateful for the generous support received from the KMR Memorial Golf Tournament and the quality of care at Eastman Institute for Oral Health.
“It really is incredible to see the difference between birth, early NAM, late NAM, surgery and how he looks today," said Alex Caminiti, Felix's dad. "Wow. Simply astounding. What a mind blowing difference it made. Felix loved Dr. Shope so much, and it meant so much to me that she was so sweet to him and us. I will remember it for the rest of my life.”
“We’re so thrilled to have helped Aiden and Felix and many other babies and their families,” said Jamie. “When Kory’s buddies suggested a golf tournament a few years ago, we never thought that it would turn in to this. When I met Tricia and Aiden, near where I live in Pennsylvania, the extent of Eastman’s outreach really set in. I truly believe that this is a shining example of just how it’s possible for beautiful and amazing things to come from something that seemed so horrifying at the time, like the loss of a wonderful man like Kory. It is an immense blessing for us to be able to keep Kory’s smile alive through these kids!”
For more information about the KMR Memorial Fund and Golf Event, Saturday, July 29 at 12:30 p.m. - 7 p.m. at the Silver Creek Golf Club in Waterloo, please contact KMRGolfEvent@yahoo.com or call Jamie at 304-685-6472, or Mandee at 315-651-9696.