- The Enterprise
- The Recorder
Everything was coming along great for Moise and JoDee DeVillier.
They had good jobs, a loving family, they were married and expecting their first child.
The 20-week checkup would tell them if they were having a boy or girl.
They found out they were going to have a son, but he had less than a 5 percent chance of living.
“The world came crashing down,” said JoDee DeVillier.
The doctor suggested the couple terminate the pregnancy; instead they sought out a second opinion about the condition their son had — posterior urethral valve disorder, a congenital defect in boys that causes excess tissue to grow in the urethra that can block or reverse the flow of urine, affecting organs.
The couple was willing to travel anywhere and when they learned that the worldwide PUV expert, Dr. Christopher Harman, practiced at University of Maryland Medical Center in Baltimore they hit the road.
Testing revealed that their son’s PUV wasn’t genetic, it was just bad luck.
An in-utero surgery placed a shunt to drain the fluid and got DeVillier to 28 weeks, then the shunt slipped.
They could deliver their son or attempt to give him more time in the womb by undergoing a second in utero surgery to place another shunt.
It would only be the eighth time such a surgery was performed and if it was a success, it would only be the third time.
Daniel Christopher DeVillier was born at 31 weeks and “has had an amazing life ever since,” DeVillier said.
Not without trials. He will need a kidney transplant when he is older, but all his other organs are perfect. He adores animals, especially his “best buddy” Jake the corgi, and swimming.
DeVillier, who lives on a family farm that straddles the Charles/Prince George’s County line, felt “very alone” once the family came home from the hospital and sought out parents online whose children might be facing health issues.
She thought she had it bad. When she went online and connected with other parents, she realized that her family was doing better than some.
“I was living in a bubble,” she said. “My husband and I both have great jobs, we live on a family farm, my mom was able to take care of Daniel.”
DeVillier learned that in many two-parent households where a child is chronically ill, usually one parent has to give up a job to care for the child.
“I started to hear all the parents concerns. I thought, ‘Wow.’ We didn’t have financial worries, no worries about paying the mortgage.”
Within a few months of Daniel’s birth, DeVillier founded the June Brandy Foundation — named in honor of her late grandmother, June Buckler, and her late childhood friend, Brandy, who battled congenital heart disease and died at 28.
DeVillier was going to do something to help children with pediatric diseases, disabilities or illnesses and help their families too.
“Everyone loves kids,” she said. “You gotta believe in the cause.”
And who can’t get behind helping children, she figured.
A lifelong equestrian, DeVillier started organizing horse shows with the help of others in the horse community like Julie Murphy of the Southern Maryland Quarter Horse Association and Kim Gladwell of the 4-H group, Mounted Wanderers.
Cheyenne Goldsmith, 19, a member of Mounted Wanderers met DeVillier through Murphy, their horse trainer, and introduced her to Gladwell.
Soon the group was organizing events to help the June Brandy Foundation, which in just two years has raised about $17,000. DeVillier’s enthusiasm and upbeat personality draws people in, Goldsmith said.
“She is fun to work with, she’s a joy,” she said. “And the foundation appreciates its volunteers, whether they give their time or a [monetary] donation. I try to help her out as much as I can and it’s a neat way to help the community.”
The money raised during the events goes to the foundation, which provides toys for kids at UMMC, sponsors a toy box at the hospital allowing kids to keep the toy they pick, works with the Children’s Organ Transplant Association and arranges trips to Camp Sunshine in Maine through the Sami’s Sunshine program, named for Samantha Odom, 2, a North Carolina toddler who lost her battle with kidney disease in 2012.
The foundation partners with Colorado-based Rocky Mountain Decorative Embroidery for its KIDney Couture program, which provides custom-made hospital gowns and pillowcases for kids undergoing surgery, and has pitched in to help fund three research studies, including two at UMCC and one at Johns Hopkins University, DeVillier’s alma mater.
The proceeds of an ongoing raffle for an heirloom rocking horse (the foundation’s logo) will go toward providing more support for ill children and their families and the group is working on its second annual Poker Trail Run and 5K companion run/walk during which participants can run or walk with their dogs at the Sept. 22 event at Oak Ridge Park. After the trail run, DeVillier and her volunteers will start to work on its holiday program that calls for volunteers to adopt in-need families and provide them with gifts and clothes at Christmas.
DeVillier and her family no longer feel alone with Daniel’s illness. The more they tell their story, the more they hear others.
“People have stories,” DeVillier said. “And when you tell your story, you give them the opportunity to tell theirs.”
Daniel continues to flourish, and serves as an inspiration to his family.
“Every day he wakes up and hits the ground running,” DeVillier said. “He can’t wait to see his puppy. He’s just the happiest, sweetest kid and he can’t wait to share the day.”
To pitch in
June Brandy Foundation’s purpose is to help families with children who are suffering with pediatric illness, disease, disability or other serious health conditions such as the need for organ transplant, childhood leukemia, other cancers and developmental disability. The organization is selling raffle tickets for an heirloom rocking horse. For more information, go to www.facebook.com/TheJuneBrandyFoundation or email firstname.lastname@example.org.