Madilyn “Madi” Jordan is one little girl who stayed at RMHC of the Carolinas we will never forget. Her story is one of a young fighter and survivor from Anderson, S.C. At the age of just a year and a half, Madilyn was diagnosed with a rare form of liver cancer.
The Ronald McDonald House became their home throughout the course of over a year. The close proximity to the Greenville Health Systems Children’s Hospital made it possible for the family to stay near Madi and to the countless team of physicians caring for her. The house met their needs as a family, there was a place to sleep, a place to have snacks and meals and like every little kid a place to play indoors and outdoors. After many rounds of treatment and surgeries her parents, Kristy and Chris were told that she had 2 months to live.
The realization of what they could be facing was devastating. The team at the House encouraged her to go online to research physicians that perhaps specialized in this type cancer. She found a doctor in in Cincinnati that was working with children like Madi, but the only issue was she did not have money for airfare for three. As fate would have it, RMHCC staff had started a partnership with a nonprofit that was funding the needs of Pediatric Cancer patients. Staff reached out to them and Madi and her family were on their way to Cincinnati- all expenses paid. Their visit ended with Madi being put on a list for a liver transplant. She came back to RMHCC and continued treatment and a week and a half later received the call everyone had been waiting for. The doctor in Cincinnati had a liver ready for Madi. RMHCC paid for the Jordan’s cab ride to the airport, a private jet transport arranged by the hospital took them up and Madi received the liver to save her life.
Today Madi and her parents are living a happy, normal life in Anderson, S.C. Madi is a thriving elementary school student that has a special story to share with all for the rest of her life. Her mom, Kristy is a supporter of the House and to this day says, “If not for the encouragement and support of the House, we don’t know if Madi would be here today.”
Our journey began, when we were 20 weeks pregnant, with our daughter Kendall RyLee Pless. After a routine blood test, we were sent to Maternal Fetal Medicine, for an extensive ultrasound. This was to determine whether our daughter had a genetic disorder. After more tests, they diagnosed her with Trisomy 18 (considered to be incompatible with life).
We decided to continue our pregnancy and have full interventions at birth. At 30 weeks, the amniotic fluid began to leak, so we were admitted on the high-risk ward at GHS. At 32 weeks and 5 days, Kendall’s heartrate began to drop, so they performed a cesarean section. She was born on March 12th,2016 weighing 3lbs 7oz. As a result of her genetic disorder, she had a bicuspid aortic valve and a large vsd in the middle of the chambers of her heart. She was admitted to the NICU at GHS for an undetermined amount of time.
When I was discharged from the hospital, my husband, our son, and I went home (which was a 45-minute drive one way from the hospital). Once we were at home, we were miserable. All we could think about was, what if something happens while we are gone, and we’re this far away. Then there was the thought of how to financially be able to travel, eat, sleep, be with our daughter, be with our son, and still maintain our home.
A social worker from the hospital had told us about the Ronald McDonald House across the street, but my husband had some reservations. After 2 nights at home, and going back and forth, I was able to convince him to at least check it out. After taking a tour, hearing about the house, and meeting the staff; we moved in the next day. The Ronald McDonald House became our home for the next 7 months, while our daughter remained in the NICU. Although, Kendall defied a lot of the odds against her and thrived through several surgeries (including open heart in Charleston), she contracted a septic infection right before she was scheduled to come home.
We lost our princess on October 10th,2016. Just 2 days before she would turn 7 months. The support shown to us from the Ronald McDonald House was phenomenal, and will never be forgotten. Without the Ronald McDonald House, we would not have been able to cope throughout our journey, neither financially nor emotionally. The house became our home, the staff and other residents, became our family. We were blessed to be able to maintain some normalcy, and still be at the hospital with our daughter every day. We were able to keep our family together, which was very important for our four-year-old son. There’s no way we could have spent as much time with our daughter, if we didn’t have the Ronald McDonald House. If it wasn’t for funding from organizations such as yours, our family, along with many others would have lost precious time with their children.
Because of YOU, and the Ronald McDonald House, we had quality time with our little girl before she passed. For that we are eternally grateful, from the depths of our hearts.
With Warmest Regards, Tracy, Kelli, and Hunter Pless
When Kathy and Brian Hobgood needed a place to stay that would be close to their daughter, Abby, who was fighting for her life in the NICU, the Ronald McDonald House was there for them. Abby was born extremely premature at 24 weeks. With their Easley home being about a 30-40 minute drive from the NICU at the Greenville Memorial Hospital and Abby in such a fragile condition, being just steps away from their daughter was invaluable.
Sadly, after 127 days in the NICU, Abby passed away.
Although the Hobgoods time at the Ronald McDonald House was one of the most heartbreaking times of their lives, the House was able to be a source of comfort and support. “Being close to the NICU gave us much more time with her, as well as a place we would come to think of as a home away from home,” Brian remembers.
The Hobgoods visit their “home away from home” each year on April 1st to celebrate Abby’s birthday. They do so by cooking dinner for the current families at the House. “It’s always good to meet other families and hear their stories,” Brian says.
Since their first stay at the Ronald McDonald House, the Hobgoods had another short stay as they welcomed their daughter Katie into the family. Still in Easley, the Ronald McDonald House was again a second home for them as they worked through Katie’s breathing problems that placed her in the NICU2 for two weeks. Katie is now a healthy, happy five-year-old and accompanies Kathy and Brian on their annual visits to the Ronald McDonald House.
While the Hobgoods had experienced heartbreak and stress during their time at the Ronald McDonald House, the Greenville House has become a special place in their hearts. Fittingly, the Hobgoods spoke at the Ronald McDonald House Groundbreaking Ceremony to build an additional 12 bedrooms to the House. This will allow the Ronald McDonald House to help more families like the Hobgoods in need of a place close to their sick or injured child.
The Ronald McDonald House keeps families close, providing hope, encouragement and comfort when they need it most, but once a family has stayed at the Ronald McDonald House, they become a part of our family. The Torrs are a perfect example of this.
After spending 8.5 weeks at the House in 2006 while their daughter Ana, now 9, was in the NICU, the Torr family continues to come back. Each year, Kevin and Vanessa Torr and their two children, Ana and Ethan, 4, visit the Ronald McDonald House in Greenville to cook a hot meal for the House’s current families in honor of their children’s birthdays.
The Torrs continue coming back each year because they know first-hand what these meals mean to families.
“Spending all day at the hospital, it really drains you,” Vanessa remembers. “It was really nice to come home and smell the home-cooked food and have a hot meal.”
The House is very special to the Torr family in more ways than one. It was a place where they could relax, take a deep breath after being at the hospital all day, and find some privacy in their own room. But it was also a place where they could connect with others.
The Torrs had many special bonds while at the House, including a close friendship with a fellow-resident Robert. Robert, who has since passed, came to the Ronald McDonald House in Greenville all the way from South Africa.
“I remember Kevin and Robert really connected. They always stayed up really late, sitting here in the living room playing video games. I would wake up and think where is he? And walk to the balcony and see them sitting here,” Vanessa laughs.
The House is filled with memories for the Torrs. Their time at the Ronald McDonald House was definitely difficult, as they supported their daughter, who was born at 28 weeks and fought through many ailments including E. Coli, Meningitis, and Pneumonia, all before her first birthday.
However, the Torr family also has many fond memories—memories of supportive volunteers, who encouraged them to make sure to take time for themselves; memories of the Night Manager Tasha, whose son Dakota, has grown up with Ana; and memories of friendships like Robert’s.
“It really brings me back when I hear families talk about what they’re going through, and I’m so thankful for this House,” Vanessa says.
The Torrs continue to support their former home away from home, not only by cooking meals, but also holding a Wish List Drive, where they collect items from the RMHCC wish list and donate them to the House, every year.
With two happy and healthy children, Kevin and Vanessa enjoy supporting the place that was their support system, place of peace, and always kept their family close as they fought for their child’s life.
5-year-old Kaeden Addison is so full of love and energy, one would never know all of the struggles he has endured as an infant and young child. His mom, Carol Brockington, was working in Aiken as a surgical technician in 2010 when she became pregnant with her second son. Concerns for Carol’s health during the pregnancy forced her to stop working and focus on staying well. During her second trimester, Carol’s doctor found fluid on Kaeden’s brain. Blood tests confirmed that Carol had contracted toxoplasmosis, an infection that is caused by a parasite but rarely shows symptoms. The infection had been passed to Kaeden during the pregnancy, with major implications for Kaeden’s brain development.
When Kaeden was born in November 2010, he was diagnosed with hydrocephalus, a condition in which spinal fluid accumulates on the brain. He went into surgery for VP shunt placement at just 3 days old; this was the first of more than 15 operations that Kaeden would have on his brain. In addition, Kaeden’s eyes did not develop completely; he consequently had to have one eye removed when he was 3 months old. Due to complications with that surgery, Kaeden has had 7 surgeries on his eye, with another scheduled for January 2016. Kaeden also deals with hip dysplasia, epilepsy, cerebral palsy, myoclonic jerks, cluster seizures, and paralysis on his left side. Although he is in a wheelchair and limited in his ability to communicate, Carol says that Kaeden is expressive in his own way and “lets me know how much he loves me.”
Not surprisingly, appointments with specialists are a daily occurrence for Kaeden. Carol had to quit her job and withdraw from her nursing program in order to take Kaeden to his frequent appointments in Lexington, Greenville, Columbia, Charleston, and even out-of-state in Georgia and North Carolina. Carol and Kaeden have come to stay at the Ronald McDonald House in Greenville so that they can be in town while Kaeden meets with his doctors at Shriners and at Greenville Memorial Hospital. Having a comfortable place to stay allows Kaeden the time he needs to rest between appointments, and being close to the hospitals means that Carol does not have to make the long commute from Aiken every day. The support that Carol receives from the House has made a huge difference for her and Kaeden. She was able to be comfortable and stay worry free, despite all of the other factors constantly on her mind. Keeping her sons happy and healthy is Carol’s top priority, and the Ronald McDonald House has provided her with comfort and security during stressful times. Carol says that RMH, which stand for the Ronald McDonald House, stands for “home away from home to Rest your Mind and Heart” in her eyes.
This lifestyle has also been a challenge for Kaeden’s older brother, Kendahl. With the support of her family, Carol is able to provide Kaeden with the care he needs and Kendahl with support and stability. Carol hopes to one day be able to resume her nursing program and eventually begin working again. Although Kaeden’s health challenges have changed Carol’s life in many ways, she would not trade it for anything: “I can’t imagine life without my sunshine.”
Dana Perry and David Jennings have been through a lot the past few months. Their son, Eastin Perry, was born 3 months early—his weight when he was born: 15 ounces.
From Clinton, SC Dana went to her regular doctor for her glucose test. The results came back with protein in her urine. Because of this, she was sent to the hospital where she had an ultrasound that indicated all her amniotic fluid, the fluid that surrounds the fetus, was gone.
Immediately she was transported to Greenville Memorial Hospital. There she learned she had severe preeclampsia. She was then told she would have her baby in just a few days.
Dana was given numerous shots to provide Eastin with the nutrients that he needed to develop his lungs and brain. Two days after being admitted to the hospital, Dana had severe pains in her lower stomach, a sign she had developed HELLP syndrome, as well. She was immediately taken into emergency surgery to deliver Eastin.
Predicted as a 2-pound baby, Eastin was just 15 ounces, 12 inches long.
Immediately after birth, he was put on life support for 48 hours. He was taken off life support, put on continuous positive airway pressure, or CPAP, which is a treatment that uses mild air pressure to keep the airways open.
“The doctors said he did really well from the start with his breathing and everything,” Dana explains.
But during his first week of life, doctors found perforations in Eastin’s intestines, so he was put back on life support and ultimately had surgery on his intestines.
During this time, Dana continued her stay at the hospital due to her severely high blood pressure.
Worried she would have to drive back and forth from Clinton to see Eastin, Dana wasn’t sure what she would do when she was released, “I was a wreck about leaving. I did not want to leave my baby.”
Doctors suggested the Ronald McDonald House just across the street, and the day before Dana left the hospital, Marsha, the Director of House Operations, called and said there would be a room waiting for her the next day.
Dana checked in to the House in early February and stayed until the beginning of May.
For those 3 months, the House was a way for Dana to relax—escape the hospital just for a little time for herself.
“Being able to have my own room, my own restroom, and just to have some privacy was a big help,” Dana says. “Just being able to take some time for myself, trying to gather everything that’s been going on, instead of sitting over there in a waiting room.”
Being so close helped Eastin, as well.
“The doctors are still amazed at how well he’s doing,” Dana says proudly.
Although he has already had 2 surgeries, one for his intestines and one for hernias he developed in his stomach, and was on 10 days of antibiotics for neck infections, that hasn’t stopped Eastin. He has been developing quickly and healthily.
Doctors told Dana they thought he would be in the hospital until late May or June, but Eastin was released on May 2nd.
“They told me it helped a lot that I was there every day—having skin to skin contact. It really helped him,” Dana says.
The House allowed Dana and David to be close to Eastin, but it also allowed them to have some normalcy in their lives.
“Something that sticks out in my mind [at the Ronald McDonald House] was Valentine’s Day. They cooked steaks and green bean casserole, rolls, and salad. They even had rose pedals on the tables,” Dana remembers. “It was really nice.”
With two other children at home in Clinton, Dana is ready to go home. But the Ronald McDonald House has served as a home away from home for Dana and her family—a place of peace, quiet, and a place to just get away.
“This place has been a blessing for me. I am so grateful. Everyone was so nice even down to the cleaning ladies.”
Moving forward, Eastin will continue to have check-ups in Greenville and Patewood for his development, and Dana will be by his side every step of the way.
“My advice to moms with premature babies is to just be there. That skin to skin contact is so important,” Dana says.
The Ronald McDonald House helped Dana stay close to Eastin and helped her be there for her child. Although the House could never take the place of Dana’s home, it served as a place of peace and support in a very trying time for her and her family.
The minute baby Grey was born by emergency C section he was rushed off by nurses. The only glimpse mom, Miranda, and dad, Cody, got of their son was him being wheeled down the hall of AnMed Health Medical Center in Anderson, S.C. in an incubator before he was transferred to Greenville Memorial Hospital.
Grey was born at 1:21 a.m. with complications that the family was not expecting.
Through baby Grey’s birth, the Watson family worked with a social worker. Early on when they found out that Grey would be staying and receiving treatment at Greenville Memorial Hospital, the social worker told them she would try to get them into the Ronald McDonald House, located just across the street from the hospital. Miranda was discharged from the hospital in Anderson and came straight to the Ronald McDonald House in Greenville – “We got in on the same day,” Cody explains. “We got really lucky.”
When asked if they had any previous knowledge of the Ronald McDonald House Cody replies, “Not really everything it offered, what it was all about.”
Cody spoke highly of the kitchen and the meals that were provided. Miranda says, “It’s one less thing to worry about when you don’t have to cook.”
Sister, Anna Grace, mentions how pretty the house is, and how much she loves the snacks she and her mom grab on their way to the hospital.
But what the Watsons found the most comforting was the connections they made with the other families staying at the House.
Miranda says, “It’s been nice because we’ve been here for so long that we’ve been able to talk to the other families and give them advice to help them get along.”
They have even continued to keep in touch with families that have already checked out of the House. Miranda explains it as, “It’s all about the little connections that you make.” For the Watsons it was a bonding experience meeting and connecting with people in similar situations as themselves.
For the 3 months the Watson stayed at the Ronald McDonald House, they created their own routine, taking shifts being with Grey. As for the future, the Watsons are looking forward to finding a new normalcy—or as Cody puts it “creating our own routine for the four of us.” Back in Anderson baby Grey will have a live-in nurse for 52 hours a week and continue to see physical, occupational and speech therapists. Cody and Miranda are grateful that they were able to be by Grey’s side through his recovery and treatments, but they are excited for their entire family to be home.
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.
For the entirety of Lisa and David Struve’s 8-year marriage, they have wanted a child. After a few years without luck, the Struves began fertility treatments and En-Vitro—still without luck. Three years ago, Lisa and David decided to try adoption. Living in San Diego, CA, the Struve family started their adoption process for children specifically in California. However, after nearly 2 and a half years of waiting, the Struves decided to expand their search nationwide in February 2015.
On July 19th they received a call from their adoption agency, ironically on Lisa and David’s 8-year wedding anniversary. On July 18th at 8:45 p.m., a little girl had been born in Greenville, SC. The mother of the baby girl wanted to place her for adoption. This call came while Lisa was attending a family reunion in Richfield, NC. David, who is NAVY Chief Petty Officer, had just flown back to California to return to duty during this time. So Lisa, accompanied by her mother, immediately drove down to Greenville the very next day to meet their soon-to-be little girl.
Lisa held her baby girl for the first time, and instantly fell in love. She immediately knew her daughter’s name would be Aylssa.
Without much time to plan and without much knowledge of the area, Lisa spent her first few nights in a Greenville hotel, one in which she didn’t feel safe being alone since her mother had left to go back to North Carolina. Knowing she was alone and so far away from home, a social worker suggested the Ronald McDonald House.
Thinking it was just like any hotel, Lisa was blown away by how this House turned into a true home. This home allowed her to be near her new baby, bond with her, and be strong for her. Although David wanted to be with Lisa and Aylssa during this time, his work in the Navy only allowed him to come visit from August 1st to August 9th.
Lisa, who stayed at the House for nearly a month from July 23rd to August 15th, took comfort in meeting the other families and hearing what they were going through as well. The support, encouragement, and hope she shared with fellow families, as well as, with the staff, made Lisa feel right at home. She wasn’t alone here.
She also took comfort in the small things provided by the House. The meals that were provided, the laundry rooms just down the hall from her room—these things allowed her to spend more time with her daughter, something she had been waiting to do for 8 years.
Although the Struve family was a long way from their home in San Diego, the Ronald McDonald House became their home away from a home—a place where they were given hope, love, and the most precious gift of their baby girl, Aylssa.
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 Fenlasons 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 Fenlasons 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.
Her mom calls her the “miracle baby.” Kayla was born at week 31 with her intestines outside her body and critical lung problems. She was in the hospital surviving her complications until the age of two when she finally was strong enough to have surgery to repair her intestines. Because she was on a ventilator and did not eat for two years, she has an oral aversion and must be fed through a port in her stomach. In addition, she has infantile scoliosis and is being fitted for a body cast she will wear for the next three years.
But, at 4 years old, Kayla is playful, chatty and has a positive prognosis!
Born on New Year’s Eve in Spartanburg’s Mary Black Hospital, Karlee was immediately helicoptered to Greenville’s Childrens Hospital. Karlee was born without the correct placement of her urinary tract and colon. Multiple surgeries are correcting those problems. Karlee had a related surgery for a tethered spine, which inhibits her small body from growing. She was placed in a coma for four days so her body could heal. As tension on the spine increases, more surgeries will be needed.
Valerie just turned 10 years old and has juvenile osteo arthritis. Her family has known since she was a toddler that something was wrong with her feet because she never liked to walk.
They have been to many doctors, but Valerie was not diagnosed until she was 9 years old – just 6 months ago. It just happened there was a visiting doctor in Mayo, SC when she went for her annual check-up and he immediately asked for a blood work-up when he saw the knots on her feet. Valerie cannot sit for very long and she doesn’t like to do homework because it hurts to write.
She pops her knuckles because she says it helps to relieve the pain. Her family is concerned about the medicines she is on for pain because it may cause liver damage. She is visiting Shriners to learn about surgery options for her feet. Her visit to MUSC recently was not encouraging or productive. Currently she is wearing braces but this is not effective.
This particular auto immune deficiency is rare. Long-term, Valerie’s joints will start to curl and she will be dealing with even more pain. Pictured is Grandma Jeris Rutter, brother is James Quinn, Valerie Quinn and mom Samantha Quinn.
Joshua and his twin were both 10 weeks early. The twin did not make it but Joshua did. At 2 weeks old he had a colostomy bag because of intestinal issues. Six weeks later they operated to reattach his colon. He was on a feeding tube until he was 2 years old and had his gallbladder removed when he was four. Joshua’s tenuous state required him to be resuscitated on occasion. In response to learning disabilities, Joshua had early intervention until he was three years old and has been involved with Special Education. He plans to go to regular Headstart and regular kindergarten while also receiving physical therapy and writing therapy.
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.
At a young age, Destiny’s parents noticed that the baby’s right arm seemed stiff and she did not want to use it. After many doctor visits, they decided to try to use a body cast to loosen the tight tendons which were holding the child’s arm in the downward position. Each cast moved the arm slightly higher. However, the process was only partially successful, so doctors at Shriners Hospital decided that surgery was needed to extend the tendons so that Destiny could have complete use of her right arm.
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.