ST. ALBANS — A child has immense capacity to change someone’s life.
And that’s just what Kayde, an eight-month-old boy, has done for parents Tonyiel Begnoche, 27, and Ryan Trombley, 31, of St. Albans.
Kayde was born with chronic kidney disease in November, and has turned his parents’ lives around. In addition to the weeks in the Fletcher Allen Health Center Neonatal Intensive Care Unit (NICU), weekly medical visits, intensive daily care, and a dedicated search for a kidney donor, Kayde is also a cute, happy baby that very visibly brings joy to his parents.
“He’s amazing,” Trombley said yesterday. “He’s a blessing.”
Both parents, currently engaged to be married, have done everything they can for their son. Begnoche gave up her career and college courses to care for her son around the clock, and Trombley is literally giving a part of himself to Kayde: he’s a kidney donor match for his son, and they’re moving forward in the transplant process that will eventually take place at Boston Children’s Hospital.
With both parents doing so much, Erica Brooks, a 26-year-old friend of the couple, thought she would try to help. Brooks put on a “Supper at the Spa” fundraiser Thursday night at the Church of the Rock in St. Albans. About 30 people came to eat, chat, win some raffle prizes, get a foot spa treatment, and ultimately, lend some financial help to Trombley and Begnoche.
A rough start
When Kayde was born eight months ago, doctors weren’t sure he would make it.
“At the beginning, it was scary, scary,” said Trombley.
“They told us we were going to lose him,” Begnoche said. “We prayed and had a lot of people praying and had a lot of support.”
Kayde and Begnoche stayed at Fletcher Allen for 11 weeks in the NICU, where Kayde was on dialysis in order to filter his blood, something his diseased kidneys weren’t doing for him. Kayde was able to go off dialysis in February, and Begnoche said things have been going fairly well ever since.
“He has been a fighter,” she said.
Kayde is also a larger baby than usual for having kidney disease – he eats pretty well, and has never needed feeding tubes.
“That kid will eat anything in sight,” said Trombley.
Though he has been able to stay off dialysis and has been doing well, Kayde has not been a stranger to the doctor’s office. He has already undergone three surgeries in his short life, he gets his blood tested weekly, he visits Boston Children’s hospital monthly, and he is on six different medications.
At home, Begnoche is the main caretaker for her son. “I could probably be an RN now,” she said.
Begnoche keeps a binder tracking every time she feeds Kayde, when she gives him his medications, when his blood is tested, and any other number of items that must be done for Kayde to stay healthy.
“I always have this with me,” she explained. In case Begnoche were ever unable to care for her son, she wants his care information to be available. “I would hate to have somebody not know.”
Begnoche said she gave up her classes she was taking to become a special education teacher in order to care for her son, something that was difficult, but has been worth it.
Kayde’s doctor, Dr. Laura Bellstrom of Franklin County Pediatrics, said Begnoche’s dedication to caring for her son is what has made the difference.
“Tonyiel in particular has been remarkable in doing basically what a multi-disciplinary team would do,” Bellstrom said. “[Kayde]’s done very well.”
She added that Begnoche and Trombley have handled Kayde’s condition extremely well, especially since the couple has two other children – Erick, 8, and Aliegha, 4.
“They’ve just been very brave,” Bellstrom said.
With Kayde’s health stabilizing this winter, Trombley and Begnoche have been able to go on to the next step – finding a kidney donor. Six of their friends and family tested, including Trombley and Brooks, and five were matches.
That news, the couple said, was great. “It’s amazing to hear that,” said Begnoche. “To know that he’s going to be OK for the most part.”
Trombley has been chosen as his son’s potential donor – people can live with one kidney. Trombley did point out that he’s had to change his lifestyle – quitting smoking, eating a better diet, and generally living more healthily – in order to be a donor of a good kidney.
“For my son, it’s gonna happen,” Trombley said in reference to quitting smoking. “It’s good to know that I’ll be able to do it,” he added.
Doctors are planning a kidney transplant between Trombley and Kayde in November. A new transplant will have to be done every 15 or 20 years, due to the chronic nature of Kayde’s disease.
“He’s going to have this for the rest of his life,” Begnoche said.
The couple, though optimistic about the future, are prepared for the worst if it were to happen.
“The indefinite, it scares the living ‘p’ out of me,” said Trombley. “Life is a battle – there’s a lot of bumps in the road. [But] you move forward.”
“Ryan and I said, ‘God gave us him for a reason,’” said Begnoche. “If something were to happen, there’s a reason why we got him.”
The couple acknowledged that Kayde has taught them how to be better parents, and has brought them closer together.
“He’s definitely a miracle,” said Trombley.
Before two weeks ago, Erica Brooks only knew of Begnoche, Trombley and Kayde through mutual friends. But as a mother of two, an owner of a Mary Kay business, a day care and a computer consulting service, and a generally caring person, Brooks heard of Kayde’s condition and immediately wanted to help the couple in any way she could.
Brooks first tested to be a kidney donor but wasn’t a match. She then came up with the “Supper at the Spa” fundraiser, an event that drew around 30 friends, family, and perfect strangers to donate money to help Begnoche and Trombley.
“I couldn’t donate a kidney because I’m not the same blood type, and I don’t have a lot of money” said Brooks, “but I can throw a fundraiser.”
Brooks brought in 13 different sponsors for the event, giving away around $1,000 in raffle prizes and in silent auction items. “I literally walked up and down Main Street,” Brooks said, referring to how she found sponsors.
She also helped arrange a dinner and foot spas that all the participants could enjoy. “This is the ultimate girls’ party,” Brooks told the room at one point last night. “Sorry guys, I’m glad you came.”
When asked why she went through the trouble to help people she basically didn’t know, Brooks said it was just something she wanted to do. “I don’t think that somebody that’s having a really hard time with her kid who has kidney disease – they shouldn’t have to do that alone,” said Brooks.
More fundraisers to help fund Kayde’s medical expenses and trips to Boston will be coming up this fall, including another dinner on Sept. 27. To learn more, visit https://www.facebook.com/kaydeskidneys.