- 01 October, 2014
Stories of Courage
Katie Marie Stuckey, a fourth grader at Wilkinson County Elementary in Ivey, GA, is no stranger to the Ronald McDonald House. Katie and her family have had multiple stays at the House this past year.
Two years ago, when she was eight years old, Katie had a spinal fusion procedure done at Shriner’s Hospital for Children in Greenville, SC. The spinal fusion placed rods in Katie’s back to help straighten her spine, curved by a condition called scoliosis.
It was then that Katie was diagnosed with Ulrich Congenital Muscular Dystrophy, which is a genetic condition that mainly affects skeletal muscles, the muscles that help our bodies move. Although a quarter of a million children and adults are diagnosed with some form of Muscular Dystrophy, the specific form of Ulrich Congenital Muscular Dystrophy is much rarer—1 in a million individuals are diagnosed with this condition.
In August 2013, the rods in Katie’s back had to be lengthened, a procedure done approximately every two months. During this time, her family stayed at the Ronald McDonald House, their first stay at RMH. Originally they didn’t know much about the House, but after their first visit, it became the family’s home away from home.
In November 2013, Katie was hospitalized with a collapsed lung and pneumonia. She was in the PICU for four months. During her four months in the PICU, she had another lengthening of her rods. During this time, her family stayed in the House again.
The numerous procedures took a toll on Katie and her family. Her parents, Molly and Brian, and her grandparents took turns staying in the House and visiting Katie.The family credits the friendly staff at the Ronald McDonald House for helping to keep their mind at ease as much as possible through these tough times. “Talking with the staff was a relaxation coming home after the hospital before going to bed,” the family says.
Katie was having trouble through the numerous surgeries, so her doctor, Dr. Mendelow at Shriner’s Hospital, recommended magnetic rods. Magnetic rods allow the rods to be lengthened without surgery. Instead, the rods are lengthened with a magnetic machine placed outside of Katie’s back.
Only three patients at Shriner’s Hospital for Children in Greenville have ever had this procedure done, and now Katie is one of them. In June 2014, Katie had her magnetic rods put in. During this time her family stayed at the House for about four weeks. Now, the family comes back every two months for the lengthening of Katie’s magnetic rods. Each time they stay at the Ronald McDonald House, the place that helped comfort them in their time of need so many times before.
Katie had her second magnetic lengthening done this month. In her short life, Katie has fought through a lot, and she continues to fight with the help and support of her family. Katie’s special story can be seen in a documentary Shriner’s Hospital for Children is filming about her magnetic rods.
Josh and Jenny Fenalson ventured a long way from home for one very special reason—an addition to their family. The Minnesota couple drove twenty-one hours through the night, with their two sons Jeremiah, 8, and Elijah, 6, to Greenville, SC to meet the newest member of their family, Zeke.
The Fenalsons had thought about adoption for a while. “It’s something that has been on our heart for a long time,” Jenny says, “Not even so much as we wanted to add to our family, but see who God might have for our family.”
Last winter, the family decided the timing was right to pursue adoption. Open to children six and under, infants and sibling groups, the family applied for waiting children and infant adoption programs. Before being matched with Zeke, the Fenalsons had been matched once before, but the birth mother elected to parent. But, this time, it felt right.
An unlikely match because of the distance between South Carolina and Minnesota, the Fenalsons were matched with Zeke through several series of events. “It was just meant to be,” Jenny says.
The Fenalsons had always known Zeke would come to them as a child with special needs. Initially doctors thought he may have Down Syndrome, but with more testing, he was diagnosed with Trisomy 13, a very severe and rare chromosome disorder—1 in every 16,000 infants are born with Trisomy 13. “We knew the possibilities of everything and wanted to be here to be by his side, be his advocates, and be his parents. And love him for as much time as we could,” Jenny says. Two weeks after finding out this information, Zeke was born, six weeks early.
As quickly as they could, the Fenalsons were by his side in the NICU. With little time to plan, the Fenalsons stayed in a hotel for the first few nights they were in Greenville, but with the encouragement of the nurses and doctors in the NICU, they decided to look into the Ronald McDonald House, a place they had heard of before, but weren’t exactly sure how it all worked. “We knew that people could stay there, but we didn’t know the extensiveness of the hospitality,” Jenny says of the House.
Just a few days after arriving in Greenville, Josh, Jenny, and their two children moved into the Ronald McDonald House, a much closer and much homier option than their hotel. “The food and how that’s prepared by volunteers and sponsors, to have home-cooked meals a lot that’s amazing,” Josh adds about the House, “The facilities are a great benefit, especially for us having the kids with us, having the playground here is great and the staff is super friendly.” Jenny, a homeschool teacher for their two boys, is able to continue their schooling, giving the family a familiar routine and as Jenny calls it a “home away from home normalcy.”
“[The Ronald McDonald House] is a place where we can be, make a routine, and keep us together. It’s hard, we get a little homesick, but I think it would be much harder if we were all apart,” Jenny says. The House allows the Fenalson family to eat, play, and support the newest member of their family together. Josh and Jenny take shifts visiting baby Zeke in the hospital—two or three hour shifts, once or twice during the day. Even Elijah and Jeremiah take time away from their favorite part about the Ronald McDonald House, the playground, long enough to spend time with Zeke, reading him Goodnight, Moon and Cloudy with a Chance of Meatballs, once a day.
“That’s also a really nice thing about the House, the proximity to the hospital. We can just walk across the street,” Josh says. The Fenalson familiy didn’t know, and still don’t know how much time they will have with baby Zeke, but for now, the Ronald McDonald House allows them to be right by his side, giving him as much love and support as possible, for as long as possible.
For David Shevlin, Jr. (DJ) his 13th birthday will be one he never forgets. From Royston, Ga., DJ, his sister, Savannah, and parents David and Stephanie decided to have a day on the lake for his 13th Birthday. The morning of DJ’s birthday, the family took a friend’s pontoon boat out on Lake Hartwell to celebrate DJ. After a few hours on the lake, the weather took a turn for the worse so the family headed in for the docks. DJ, his mother and sister were sitting on the front of the pontoon as it slowly moved towards the dock. Suddenly, a huge wave came up from the lake knocking DJ off the boat. Immediately, he was sucked under the boat and popped up about two minutes later. It was not until DJ started paddling towards the boat that they realized something very horrible had happened. DJ’s arm had been broken in two places and once they pulled him onto the boat they saw something even worse. While under the boat, the propeller had cut off DJ’s side completely leaving a huge gash, almost resembling a shark bite. DJ was immediately rushed to Greenville Memorial Hospital and doctors began what was soon to become a seven hour surgery to repair his arm and side. After surgery, caregivers were amazed by how lucky DJ was to have not lost all his blood or have any of his internal organs touched by the propeller. During his stay in the hospital, DJ’s parents stayed at the Ronald McDonald House across the street. They remarked, “it was so nice to have somewhere to go and take a shower and eat while we were in this stressful, unexpected situation.” For 24 hours each day either Stephanie or David was by DJ’s side and the other was at the House resting. After 10 days in the Pediatric Intensive Care Unit and later the Children’s Hospital wing, DJ and his family were able to return home. DJ is doing well today and will soon go to get his stitches out. His family is eternally grateful for the amazing help and support they received at the Ronald McDonald House and Greenville Memorial Hospital.
Also known as Lacey, 9- year-old Lissandra has spina bifida. She has been visiting the Greenville Ronald McDonald House since she was three years old. Although the family was here just a month ago, Lacey’s mom noticed that her arches were rising which is an indicator that the spinal cord is tethered and surgery is required.
Spina Bifida is a problem with how the spine and spinal cord develops and can begin to develop in a fetus before the mother even knows she is pregnant.