Daniel DeVillier is not allowed to vomit.
The 14-year-old St. Mary’s High School freshman casually shared that fact, along with how he was taught different ways to keep everything in his stomach, while talking about his upcoming cross country meet later that day in early October.
“I have a slight cold. Everything will be fine. I’ll run a little slower,” Daniel said matter-of-factly after a sneeze. “We don’t like fevers. Vomit, we just go straight to the hospital.”
It’s an unusual restriction for a teenage athlete, but for Daniel, it’s just another part of living a life doctors once said wouldn’t exist at all.
From his earliest moments, faith has sustained the DeVillier family through what seemed impossible.
Daniel was born with 10,000 extra cells between his bladder and his urethra. Originally diagnosed with posterior urethral valves, it is now believed he had LUTO, or lower urinary tract obstruction.
“He has no disease. No genetic markers,” his mother JoDee DeVillier explained. “Those 10,000 cells were just that. Ten-thousand cells that could have been anywhere on his body and they were at the bottom of his bladder between that urethra. They were not a valve.”
Before he was born, Daniel was fighting for his life. His parents were advised to end the pregnancy when a routine sonogram revealed that the amniotic fluid – typically surrounding the baby and providing a safe environment – was trapped inside Daniel’s body.
“We were told to kill him,” DeVillier said. “We didn’t accept that at face value.”
It was the first of many times the DeVillier family would choose faith over fear. Parishioners of Our Lady of Sorrows in West River, they have relied on their Catholic faith throughout their journey.
DeVillier converted to Catholicism before she was married, and her mother will join the church next Easter. Daniel’s paternal grandfather is Deacon Moise DeVillier Jr. at Holy Family Catholic Church in Davidsonville, where the family – Daniel, his parents and younger brother Benjamin, 11 – worships when he preaches.
“I pray a lot for my health and for life to stay good,” Daniel said. “I’m grateful for good parents. Our family, the core seven, are extremely close. Sunday dinners we’re all eating together and having a good time.”
A shunt was injected through JoDee DeVillier’s body into Daniel’s bladder two different times during her pregnancy to keep the fluid draining, allowing Daniel to develop as much as possible before being delivered at 31 weeks. Within an hour after his birth, Daniel had surgery to clear the blockage from LUTO. He spent the next two months in the neonatal intensive care unit.
Because of the damage that occurred before birth, Daniel’s kidneys and bladder were permanently scarred. At age 5, he received a kidney transplant from his father. Surgeons reconstructed his bladder using part of his intestine and colon. They performed a Mitrofanoff procedure, creating a channel for his bladder that was necessary before his kidney transplant.
Daniel is responsible for taking his own medications on time throughout the day and must drink plenty of water, especially now that he is training at the gym and running cross country.
“I grew up with it,” Daniel said, of his strict schedule. “It’s a part of my life and I can’t change it. I’ve trained 14 years to be on time and take my meds.”
When Faith Moves Mountains
Perhaps no moment better illustrates the power of faith in Daniel’s journey than a crisis during his kindergarten year. His body was allergic to the medication that kept him from rejecting his new kidney. Daniel was near death.
His kindergarten teacher at St. Mary’s School in Annapolis called JoDee DeVillier, saying she had a bad feeling and asked if everything was OK.
“I told her no, it’s not OK,” DeVillier said. “She said, ‘I’ll take care of it.’ I’ll never forget it. ‘I’ll take care of it.’ I said ‘Ok’ and hung up the phone. She’s a kindergarten teacher, like no offense, not a nephrologist. She’s not a transplant surgeon.”
Unbeknownst to the DeVillier family, the kindergarten teacher had the entire school population, from kindergarten to high school seniors, pray the rosary for Daniel. That night, Daniel’s health took a positive turn.
“That’s what she went with. I’ll take care of it. God hears the prayers of little children,” DeVillier said.
The St. Mary’s community has continued to embrace Daniel. “The elementary and middle schools we knew quite well. They always did their best to make sure Daniel could be included,” DeVillier said. “I am beyond grateful for not just the education they provided, but for the additional. The confidence and the investment you do feel like they have genuinely invested in my son for him to be the best him.”
A Voice for Others
This past summer, Daniel shared his experiences when he spoke to more than 10,000 international doctors and medical professionals at the World Transplant Congress in California. As he stood there, the only teenage speaker, he remembered thinking “How did I get here?”
“I felt just great. I was helping people see it from a patient’s perspective,” Daniel said. “I gave a fresh perspective.”
His mother also spoke at the conference about the benefits of a new blood test that can provide updates on organ rejection. Daniel, she said, was able to speak to the group about missing out on things and feeling different. He talked about the need to know what was happening and to not talk down to young patients, but to include them in discussions involving their health.
“My job is to prepare him to grow and be able to do all of this for himself,” DeVillier said. “Hopefully, he’ll go from needing me to wanting me in his life. But I’ve got to empower him to understand his medicine, to understand his care routines.”
As he becomes his own health advocate, DeVillier and her husband are letting Daniel explain his health issues with the staff at St. Mary’s School.
Living with Purpose
Daniel’s health problems are far from over. A kidney is designed to go through puberty only once and Daniel’s father’s kidney is now going through it again. Daniel averages about two surgeries a year to remove polyps formed in his Mitrofanoff.
Yet Daniel approaches his challenges with remarkable grace and perspective rooted in faith.
“Everyone is given a path in life. Everybody has something. Mine is a little extreme. That’s OK,” Daniel said. “I am living the best life I can with my circumstances. You talk about the good that is happening. Focus on the good.”
Helping Others
JoDee DeVillier is the mother of a miracle. Her son, Daniel, 14, has defied the odds by surviving numerous medical emergencies. She remembers vividly the excitement she felt preparing for Daniel’s first Christmas and was shocked when another mother said she hated Christmas because she could barely afford her child’s medicine let alone presents.
“We never had financial worry. We’re not rich people, but we’re comfortable and we’re blessed,” DeVillier said, of her family. But the burden for many other families was crippling, she said.
In 2011, she founded the June Brandy Foundation, a nonprofit that helps the families of children suffering from any life-threatening or life-altering illness, disease or disability. The foundation’s first project was providing Christmas presents for children and their siblings to 25 families across the United States. Today, it provides Christmas gifts for about 300 families.
“We provide the iPads for 13 different hospitals across the United States,” DeVillier said. “We also have a frequent flyer iPad program where we provide iPads to children who are in the hospital more than they’re at their house.”
The foundation also provides food year-round to the dialysis center at The Johns Hopkins Hospital in Baltimore and purchases needed supplies, whether it be shelving units to hold respirators or providing walkers for families when insurance won’t cover the cost.
“God knows what we’re called to do, and I know I’m called to help others,” DeVillier said. “We help families from all walks. Life has value. No matter what a child is suffering, that child has something to give back to this world.”
Email Katie V. Jones at kjones@CatholicReview.org
