- 24 June, 2015
Stories of Courage
When you meet James DeLano, a 9-year-old boy from Hoover, Alabama, you would never know the struggles he faces on a regular basis. Upon meeting James you may notice he is a happy boy who shares a close bond with his dog, Lennie, enjoys playing outside and reading books like the Lord of the Rings series. What you may not know is that James lives with two chronic diseases that cause him to visit the Ronald McDonald House in Greenville every 4 months.
According to his mother, Victoria, James was born a healthy baby in 2005. He wasn’t diagnosed with Eosinophilic esophagitis (EoE), until he was four years old, but looking back the diagnosis explained many instances of sickness they noticed when James was vomiting more than a usual child. EOE is an allergic inflammatory disease characterized by elevated eosinophils in the esophagus. Patients have reactions to food which in turn enflame the esophagus causing them not to be able to eat certain foods. Because of this James was put on a feeding tube at age 5 and continues to have it to this day which he carries in is backpack at all times.
During the time of James’ diagnosis there were not many doctors who treated this disease. One day, his family came across a specialist in Greenville, named Dr. Markowitz, a specialist with Greenville Health System, who was able to help James. Victoria had stayed at the Ronald McDonald House in Cincinnati with James for an appointment, so when she came to Greenville she asked James’ nurses to see if they could stay. Today, they have stayed at the House every time they come to visit Dr. Markowitz which is every 4- 6 months since 2009.
When asked about what the Ronald McDonald House means to them Victoria explained, “Being so far from home I don’t know what we would have done.” Having a chronically ill child-I am not working anymore, so that has caused an additional financial burden in addition to paying for the healthcare. There is no way we can pay for a hotel.” She added, “There is just so much to go along with caring for a chronically ill child. It’s nice to have the security and proximity to the hospital. When you are up for 3 days straight with your child go through test after test, just to be able to get a few hours of sleep, rejuvenates your body and mindset and allows you to keep moving forward.”
A year after James was diagnosed with EOE he hit another bump in the road and was diagnosed with a genetic disorder called Mitochondrial Disease. This disease affects James’ energy output and causes him to be very weak. Due to the mitochondrial disease, James sometimes needs a wheelchair to help him with long distances. He also has Lenny, a yellow lab mobility dog, who assists him with daily tasks like turning lights on and off and retrieving Gatorade from the fridge, and most importantly, spending long days in the hospital with James. James has been on an abbreviated school day or homebound for 3 years due to the diseases and had also undergone 20 or more surgeries or biopsies to run tests to constantly monitor and treat his condition.
When James comes to the Ronald McDonald House he says “it’s fun and he can be himself.” He doesn’t worry about his tests and procedures, he is allowed to use the playroom and be a normal child. The future for James will be to continue living his life to the fullest and be a happy child with his mother, father, Jim and younger sister Amelia.
In very appropriate matching “Trouble 1” and “Trouble 2” t-shirts, the Suarez brothers, Isaias, 6, and Jonatan David, 4, run around outside the Ronald McDonald House, rebelliously tip-toeing around puddles, using Krispy Kreme doughnuts as fuel—pretty typical behavior for young boys. You would never even notice that Isaias has two prosthetic legs.
According to his mother, Sarahy Suarez, and his father, Josias Suarez, Isaias barely notices it himself.
“I pay more attention to it when people stare than he does. It’s a mom thing. You worry about your children,” Sarahy says. “He doesn’t even mind it. People look or stare and he’s just like, yeah whatever.”
Even when Isaias was in the womb, Sarahy and Josias knew Isaias life would be different than most children. When Sarahy was 3 months pregnant with Isaias, doctors noticed his legs were clubbing. Four months into her pregnancy, doctors saw his tibia bone was missing, meaning Isaias’ legs would most likely have to be amputated after birth. Wanting a second opinion, Sarahy’s sister suggested they visit Shriners Hospital for Children in Greenville, SC.
Sarahy and Josias left their home in Charlotte, N.C. and visited Shriners Hospital for Children for a second opinion. Sadly, the doctors at Shriners said the same thing.
Faced with some tough decisions, the Suarez’s stayed strong just like they now teach Isaias and Jonatan David to be.
“Don’t get me wrong, when they told me [about Isaias] I was sad. I cried a lot,” Sarahy said. “I was given the option at about 3 to 4 months pregnant if I wanted to abort. And it was not an option for us. If God sent my son to me like that, then that is how I was going to keep him.”
Although the Suarez’s could have chosen surgical rods for Isaias’ legs, they made the tough decision to have his legs amputated. The rods would have to be replaced surgically every time he outgrew his legs, and eventually the rods would puncture his knees, making it impossible to walk, placing him in a wheelchair.
“If he was in a wheelchair, he couldn’t be nearly as active as he is now,” Josias says.
Born 32 weeks into Sarahy’s pregnancy, Isaias was premature. He spent the first two weeks of his life in the NICU, and just over a year after that, in October 2009 Isaias went through a 3 hour surgery to amputate his legs at Shriners Hospital for Children.
That was the first time the Suarez family stayed at the Ronald McDonald House.
“Before that, we were going back in forth in one day,” Josias said, “And ever since his surgery we’ve stayed here.”
The Suarez family comes back to the Ronald McDonald House just about every 6 months now, as Isaias outgrows his prosthetics.
“We love it here. This place just makes you feel like home.” Sarahy said of the House.
“It’s home-y. You know everybody and everybody is so friendly.” Josias added. “I relax here more than anywhere else.” They have especially connected with the night manager at the House, Tasha, and her son, Dakota.
“We’ve seen her little boy grow,” Sarahy says. “I can’t believe how big he is now. We talk about what [Isaias]’s going through and she talks about what her son’s going through.”
Even Isaias gets excited to come to the Ronald McDonald House. The Suarez’s most recent visit was especially exciting because Isaias who dreams of being a member of the Carolina Panthers got approved for his blade runners—which will be adorned with Carolina Panthers’ name and colors, of course.
“Now that he is going to have his blades, we’ll see what he can do,” Sarahy says of her son.
Although, not having his blade runners has never seemed to slow Isaias down. He and his brother are active in T-Ball, boy scouts, and before it moved locations, karate. Isaias and his family also participate in his school fundraiser where students and parents run and walk as many laps as they can. This past year, Isaias was set to participate in the regional Special Olympics, but sadly it got rained out.
That won’t stop Isaias, though. He is looking forward to next year’s Special Olympics already. And until then, he is playing in his rehab center’s sports league.
“We push him to do a lot of things,” Isaias’ mom says. “He likes to be involved and definitely likes to participate. He used to say I can’t do it. Now we tell him you can’t say that, you have to keep trying. He tries everything at least once and if he can’t do it, then he’ll keep trying.”
The Suarez family has stayed strong through a tough time in their life, and the Ronald McDonald House has helped them in more ways than one.
“To be able to have his family around, and to have the simplest things—even distractions for him. it was a big help for us,” Josias says. Isaias and Jonatan David love the House’s playroom, of course, but for Isaias, his mom believes the House means more than just a fun night with an X-Box.
“He knows he’s one of the people [at the Ronald McDonald House]. He’s not different here.” Saray says.
And in many ways, Isaias is just a normal 6 year old boy. He likes video games, he loves sports, and he gets upset when he has to sit still for too long. Through many organ tests and even a chromosome test, Isaias’ doctors never diagnosed him with anything. “Mentally, internally everything is normal. It’s just physically,” his mother explains.
Sarahy and Josias Suarez know their son has been through a lot and will continue to face challenges in his life, but they are confident he can handle it.
“He’s a strong person,” Sarahy says of Isaias. “They are much stronger than what we think. They can handle it.”
Looking forward, the Suarez’s, who are expecting again, look to move closer to family in Florida where Josias is from. But, they also look to continue to strengthen their family and push Isaias and Jonatan David to go to college, start careers, and forge lives for themselves.
“My goal for Isaias is to make him as independent as I can. I don’t want him to depend on his disability as a downfall.” Sarahy says about her son.
“You fall, you get up. Because of his disability we are trying to be as strong as we can with him. He’ll learn to do things on his own. He doesn’t need anyone to help him,” Josias adds. “He’s going to be successful, and his legs won’t have anything to do it.”
For the majority of Lydia Alleman’s pregnancy in 2013, everything was fairly normal. Four months before her child’s due date, however, she began to experience severe abdominal pain, so she visited her doctor. Thinking it was Braxton Hicks, a common condition during pregnancy, the doctor sent Lydia home. But after gaining 13 pounds in just a week and a half, she was immediately admitted to the hospital. There she was diagnosed with preeclampsia HELLP syndrome. Preeclampsia HELLP syndrome is a life threatening pregnancy complication, often associated with liver complications and access fluid retention, explaining Lydia’s abdominal pain and weight gain.
On January 4, 2014, two days after Lydia was admitted to the hospital, Mike and Lydia Alleman’s daughter Zoey was delivered via C-section—f our months before her due date.
Although Lydia recovered quickly, Zoey was immediately admitted to the NICU. Although the preeclampsia HELLP syndrome affected Lydia, not Zoey, the early delivery prompted doctors to send Zoey to the NICU, where the Allemans were told she would likely be there until her original due date April 12th.
From January 4th until April 11th, the Alleman family stayed at the Ronald McDonald House.
It was the simple things that blew the Allemans away. “Everyone was so nice, there was free wifi, we were able to do our laundry there, and it was just so close to the hospital. If something were to go wrong, we could be right there,” Lydia says of the House.
Having the little things taken care of was a huge help, Lydia says, “It took so much off our shoulders. It was a huge stress relief.”
The House not only supplied everyday amenities for the Allemans, but it also supplied a support system.
“It was good to be around people going through the same things. We were all in it together,” Lydia says.
There was a sense of togetherness in the House. It was a place for support and encouragement—real understanding of what each other were going through.
The residents weren’t the only support the Allemans had. The Allemans bonded with the staff, particularly Tasha, the House’s night manager, and Dakota, Tasha’s son, affectionately known as the House’s “mascot.”
“We really bonded with Tasha and Dakota. They were both so sweet.”
The support of the staff and the residents and the seemingly simple amenities made all the difference for the Allemans.
For four months, the Allemans called the Ronald McDonald House home. On April 11th Zoey was discharged from the hospital and went home to Reidville, SC. She is now a healthy baby, only slightly behind in her progress. With the help of the Center for Development Studies in Greenville, her pediatrician in Reidville and her physical therapist in Reidville, Zoey should be all caught up by the time she is 2 or 3.
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 Fenlason 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 Fenlasons 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 Fenlasons 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 Fenlasons 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 Fenlason 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 Fenlason 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.