ST. ALBANS — When he’s playing with his Minion stuffed animals, being fed through his gastrostomy tube or sitting in the arms of his parents, it’s hard to tell whether 20-month-old Kayde realizes how much he’s loved.
But there’s no question about it. Kayde, who was born with chronic kidney disease in November 2013, has the constant dedication of his mom and dad, Tonyiel Begnoche, 28, and Ryan Trombley, 32, of St. Albans; has the help of community members who have donated time and money to assist with medical expenses; and now, he’s about to have a new kidney, thanks to Ann Delaney, a stranger to Kayde up until several months ago.
“I saw a post on Facebook so I sent (Tonyiel) a private message and asked what to do,” said Delaney on Monday.
Delaney, a 41-year-old Swanton resident and Northwestern Medical Center Environmental Services employee, contacted Begnoche in April and immediately began undergoing tests to see if she would be a match.
“We had to go through a lot of testing,” said Delaney, adding that NMC helped push so everything was done over three days there and at Brigham Women’s Hospital in Boston. “I’m scared of needles, but I did it.”
From a total of 12 people who have offered to donate over the past year, Begnoche was among four in the last round before Kayde would have to rely on a deceased donor. A kidney transplanted from a healthy, living person is typically good for 15 to 20 years – a donation from a deceased person usually lasts just eight.
“It was the last chance we had for a living donor,” said Trombley.
Of the last four potential donors, Trombley and Begnoche chose Delaney as the best person to save their son’s life.
“She was the best pick out of all of them,” said Trombley. With a lower BMI (body-mass-index) and healthy habits, Delaney was the best candidate to donate and recover from a kidney transplant.
And with Kayde retaining just four percent of his kidney function, he needs a transplant as soon as possible. The operation is scheduled for next Thursday, Aug. 6, at Boston Children’s Hospital and Brigham Women’s Hospital.
When asked why, as someone who didn’t know Kayde or his family prior to this spring, Delaney chose to donate, she simply said, “It’s the right thing to do.”
“Ann didn’t really have any obligation to do it, but she chose to give Kayde a chance,” said Begnoche.
From the beginning, Kayde’s condition has inspired many selfless acts.
At a community fundraiser held exactly one year ago, Begnoche and Trombley told the Messenger how Kayde had changed their lives. When he was born at University of Vermont Medical Center, doctors weren’t sure he would make it. For 11 weeks afterward, the baby remained in the Neonatal Intensive Care Unit (NICU) and was on dialysis.
When Kayde could finally come home, Begnoche became his full-time caretaker. She gave up her college courses in special education to be with her son, and she joked she could be a nurse with all the medications, doctor’s appointments and surgeries she’s had to keep track of for Kayde.
While Trombley was planning to donate one of his kidneys to Kayde this past fall, he wasn’t able to meet the health requirements. Begnoche’s brother also was lined up as a donor, but the operation recovery – between six and eight weeks – was going to put him out of work too long to be financially sustainable.
“For this last year, we’ve been on a roller coaster,” said Trombley.
Both parents are preparing for what’s to come – the operation and the subsequent three-month recovery for Kayde. Begnoche will stay in Boston with her son while Trombley will be home with 5-year-old daughter Aliegha and at times, with his 9-year-old stepson, Eric.
Begnoche’s first husband, Erick Begnoche, also will take care of Eric.
“It’s going to be a hard road,” said Trombley. “The worst part is not having [Kayde] here.”
Begnoche talked about the things she wouldn’t experience with her other kids as she stayed in Boston. “I’m going to miss Aliegha’s first day of kindergarten. I’m going to miss Eric’s first day of fourth grade,” she said.
But, she added, “You gotta do what you gotta do for your kids.”
They are not the only ones whose lives will be turned upside down.
Aside from her kidney, Delaney will give up six to eight weeks of work to recover from the operation. She added that NMC co-workers have donate 120 of their vacation hours to her, and her family is doing what they can to help, too.
“My husband is supportive, my kids are supportive, my mother is actually coming to take care of me,” said Delaney. A friend also set up a gofundme website for Delaney to help pay for the bills while she’s in recovery.
To help with Begnoche and Trombley’s finances, Franklin Grand Isle Community Action is paying for their rent during the operation recovery period so the family can put what they earn towards their expenses in Boston.
T-shirts are being sold from Kayde’s Kidneys Facebook page and by word of mouth, and in the past, the family has benefited from a number of fundraisers. The first was held last August – it included a dinner, silent auction and foot spa at the Church of the Rock and was organized by Erica Brooks, who, like Delaney, didn’t know the family before she heard its story.
“It’s amazing to see – a lot of people realized our story and want to help and donate,” said Begnoche. “Everything has worked out sort of when we need it.”
Saving a life
All the work, the donations, and the selfless acts will be worth it in the end, said Begnoche, Trombley and Delaney, when Kayde can live a happy, healthy life.
“When all goes well, you get to watch him grow,” said Delaney.
Begnoche added, “It’s going to be interesting to see. His limbs will get bigger. He’ll start doing things he’s not doing now.”
Even Monday, prior to a transplant and all other health problems withstanding, Kayde seemed to be thriving, smiling up at Delaney and his parents, watching his favorite movie, “Despicable Me,” and playing with his yellow Minion toys.
“He’s actually this little person,” said Begnoche. When she asked doctors why Kayde was growing to the size he was despite not having full organ function, they said he seemed to be an anomaly.
“They said Kayde is just this special kid that’s just doing great,” Begnoche said.
And as all mothers understand, the love of a child, one as special as Kayde, can compel people to do amazing things. Like give up a kidney.
“I’m a mother – I’d want it done for me,” said Delaney. “I think it was meant to be.”
Begnoche added that she felt like Kayde had been born for this very reason – to show what people, even strangers, can do for others.
“Sometimes, miracles can sort of happen in little ways,” she said.
To buy a t-shirt or learn more about Kayde, visit https://www.facebook.com/kaydeskidneys?fref=ts.
To donate money to support Ann Delaney, visit http://www.gofundme.com/y9swg85w.