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Crimson’s Story

Two years ago, Crimson’s family survived a home fire. Although everyone made it out, 13-year-old Crimson was burned on more than 30 percent of her body with second and third degree burns. Crimson was airlifted to the University of Alabama’s Children’s Hospital burn unit.

After five days at the Alabama hospital, the surgeon there recommended that, for the best possible outcome, she be transferred to Shriners Hospitals for Children–Cincinnati. Crimson had five surgeries and endured intense physical therapy, learning to walk again. Today she is learning to live her life as a burn survivor. She is still receiving treatment for scar management that will continue for the next few years.

The night before Crimson and her mother left the hospital from their four-week in-patient stay, her mother left this note for the staff:

To All of Shriner’s Staff,

THANK YOU!! Those two words are not enough for what you have done for my daughter & my family. I was terrified when we first arrived. I was scared to be so far away from home without my support group (family), little did I know you all would become exactly that for Crimson & our entire family. I had no idea what to expect. Not only were the medical staff extremely above & beyond my expectations in the clinical care but also in the emotional care. To have a surgeon, nurse, resident offer ME coffee, let me cry on their shoulder & just sit & talk with me was so wonderful. Having nurses who actually cared what Crimson’s interests were and shared their own interests. When I say nurses, I actually mean every member of her care (PT, OT, child life, family services, photography, nutrition, custodial, security, the list is never ending.) We are blessed & honored to have ya’ll in our corner and a part of our family. This is an amazing place. The love just pours out all around. I just want you to know as we leave we will be carrying a piece of Shriners with us to share with everyone we see.

Love & gratitude until next time,

Jennifer Gilbreath

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Taylor’s Story

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When he arrived at Shriners Hospitals for Children—Cincinnati more than 20 years ago, no one could have predicted that Taylor’s experience there would put him on a path to becoming an accomplished operatic singer—but that is exactly what happened.

Linda and Robert adopted Taylor from a Philippine orphanage at ten months of age.  Two months earlier, a power surge at the orphanage started a fire that caused second and third degree burns on his scalp, arms and legs. They brought him home to Sevierville, Tennessee and visited a Knoxville pediatric hospital for care.  The hospital made Taylor compression garments to reduce scarring.

Linda’s father was a Shriner and “Road Runner”, a volunteer who transports children and their families to the nearest Shriners Hospital.  He had made many trips to the Cincinnati Shriners Hospital and had seen the excellence of its family-centered care for children with burns.  “He kept saying that we should take Taylor to Cincinnati Shriners, but I said ‘we have insurance,’” Linda recalls.

After a few months, though, they were not satisfied with Taylor’s progress and made the trip to Cincinnati.  The difference was dramatic.  “This whole team came into our room and examined him,” she said, remembering that one of their first comments was that the compression garments did not fit properly and were inside out.  “We didn’t know; we thought we were doing everything right.”

Throughout his childhood and adolescence, Taylor made multiple trips to Cincinnati for different treatments– surgical grafts to his leg, or a z-plasty to release contracting scars.  During one visit, his doctor suggested that Taylor pursue something athletic to help stretch the scars that would tighten as he grew—perhaps gymnastics or dancing, he said.

Being from Sevierville—the land of Gatlinburg and Dollywood, Taylor chose dance.   “I started with ballet, tap and jazz,” he says.  He became so adept that his first summer job was performing in the musical theater shows at Dollywood.  He soon realized that although his dancing skills got him on stage, he much preferred singing.  This realization—along with his beautiful voice, led him to Chicago’s Roosevelt University College of Performing Arts where he now majors in Opera Studies.

The spotlight of the stage has not dimmed Taylor’s humility, however.  He remembers his experience at Cincinnati Shriners Hospital, where he says his and so many lives changed for the better.  “Generosity matters; care matters,” he says.  “I remember so many kindnesses [at the hospital], from a friendly face at the front desk to waking from surgery with a Harry Potter blanket.  Those experiences helped shape who I am today.”  His mother Linda is similarly grateful for Cincinnati Shriners Hospital.  “All our needs were met in one place,” she says. “I tell people—we didn’t go there because it’s free, we went because the care was superior.”

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Sydney’s Story

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Before May 23, 2017, Six-year old Sydney was surrounded by caring family and close-knit community.  After that day, she would embark on a difficult journey that would demonstrate the true power of community, far beyond the local neighborhood.

Sydney and her family were enjoying a relaxing day in their home near Kingston, Jamaica, when an accidental flash burn caused severe injury to nearly 20 percent of her body on the torso and back.

Her mother Kerry-Ann immediately took her to the emergency room at University Hospital of the West Indies, a teaching hospital Kerry-Ann emphasizes is lacking in resources, not skill.  As an example, the pediatric plastic surgeons understood the wounds needed to be excised, but the hospital had neither Sydney’s O negative type blood nor the temporary skin to cover the wounds.  So Kerry-Ann’s teenage daughter used social media to organize a blood drive, yielding dozens of pints of blood, enough to help Sydney as well as many other patients in the hospital.  Meanwhile she and her husband were sent into town to purchase temporary skin with their own funds, a “surreal” experience, Kerry-Ann admitted.

More than a week and two surgeries later, Sydney was stable, but not improving.  “Her spirit was gone,” said Kerry-Ann.  Friends encouraged her to bring Sydney to the states for treatment.  After hearing the name “Shriners” mentioned multiple times, Kerry-Ann finally called.  When she reached Amanda, the charge nurse at Shriners Hospital for Children—Cincinnati, she felt something she hadn’t experienced since the incident occurred: hope.  “Amanda was genuine; warm and interested, without knowing us from jack fruit,” Kerry-Ann said.  “She made me feel like it was going to be OK.”

Kerry-Ann and Sydney arrived at Cincinnati Shriners Hospital at 3:00 a.m. on June 17.  “The nurses just swooped In with this elaborate ‘dance’, removing dressings and wrapping wounds, all while distracting and reassuring Sydney.  It was amazing.”

Sydney’s father arrived shortly after.  Beyond the exceptional care and treatment, Kerry-Ann said what impressed them most was the family-centered care they received at Cincinnati Shriners Hospital.  “When Sydney went into surgery one evening, the nurses said, ‘why don’t you two go out and get some dinner? Sydney is here and we’ll take good care of her while you’re gone.  That was such a gift; it gave us time to breathe and regroup.”

Ten days later when Sydney’s grandmother visited Cincinnati, Kerry-Ann said, “She couldn’t believe what she was seeing! This was a completely different child from the one who left Jamaica.  Every day since we arrived [at Cincinnati Shriners Hospital] Sydney was moving from strength to strength.”

Sydney celebrated her seventh birthday while at the hospital.  The staff held a party in her honor, complete with balloons and presents.  Here, 41 days after the incident, she was bright and energetic, a reflection of the care and expert treatment she received from the staff of Cincinnati Shriners Hospital.  When recalling the journey, Kerry-Ann connects their experience to something she always tells her children, “Live good with people,” meaning treat everyone, from the street sweeper to the executive with the same level of respect.  “Life changes in an instant.  Everyone you meet can make a difference.”

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Maverick’s Story

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The mood was joyful on April 1, 2018 when Erika and her husband Steve gathered with family at his grandmother’s Buffalo, New York home for their son Maverick’s first Easter.  Steve’s grandmother sat in the floor with the eight-month old on her lap and her pet Labrador retriever mix by her side.   Without warning, the usually docile dog gave a brief growl and bit Maverick in the face, tearing a gaping hole across his lip and cheek.

Erika rushed Maverick to the nearest community hospital where she expected him to be stabilized and then dispatched to the local pediatric hospital.  Instead, the emergency room doctor told her, “You need more help than [the local children’s hospital] can give you.  We’re sending you to Cincinnati.” Hospital staff immediately arranged for a mercy flight to bring the two of them to Shriners Hospitals for Children–Cincinnati; Steve would follow by car.  “I didn’t even know which part of Ohio Cincinnati is in,” she said about the whirlwind trip. “I was in shock; my dad gave me his shirt to wear because I was covered in blood.”

Erika and Maverick arrived at the Cincinnati Shriners Hospital late that night, and by 1:00 a.m., Ann R. Schwentker, M.D. arrived to do the first of two surgeries on Maverick.  Initially, Dr. Schwentker stitched the corner of his lip.  “I wasn’t sure Mav would ever be able to drink a bottle again, but by the next evening, he was sucking like nothing happened,” Erika marveled.  The second surgery a day later closed his cheek wound using a flap of skin from his neck area.  “They said we were lucky he had those chubby neck folds; they kept him from needing a graft from a different part of his body,” she said.  “When we got home, my friend who is a nurse marveled at how tiny his stitches were.”

Within six days of the incident, Erika and Steve were ready to return home to Buffalo with their little boy, happy and seemingly unaware of his recent adventure.  Erika said she almost did not want to leave Cincinnati Shriners Hospital. “Everyone there took worries off my shoulders. They thought of everything; sometimes things I didn’t even think of, like a toothbrush and cream for Mav’s diaper rash.” (Children often develop diaper rash after taking antibiotics.)  At one point during the stay, the nurses even took Maverick out of their room so Erika could get a much-needed nap.  “I didn’t even cry for the first four days,” she recalled.  “After I knew he was going to be OK, I let go.”

Once at home, Erika reflected on her experience at the Cincinnati Shriners Hospital.  “Hospitals are never comfortable,” she said. “At Shriners, I felt safe; it felt like home.”

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Katie’s Story

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Katie was adopted from a Chinese orphanage at age 2 ½ by her mother Kim, a Pittsburgh, Pennsylvania police officer with two older daughters, also from China. When she was two months old, Katie was accidentally scalded in untested bath water, seriously burning her left leg and side.  As she grew, Katie’s scars caused her leg and foot to become severely contracted. By the time Kim arrived in China, the contraction forced Katie to walk on her heel. Kim wasn’t deterred.  “I had thought I’d adopt an infant, but when I met Katie, it just felt right,” she said.

When Kim brought Katie back in the U.S., they visited a pediatric hospital in Pittsburgh for assessment.  Kim asked the plastic surgeon if he was a burn specialist, and he responded by saying that the surgery Katie required was a “simple release.”  Kim consented, but after the procedure Katie’s toes were still contracted nearly on top of her foot.   The surgeon’s recommendation was to amputate the toes.  “He told me that removing them would provide a more ‘aesthetically pleasing foot,’” said Kim. “The next day, I called Shriners Hospitals for Children–Cincinnati.”

At their first appointment with Cincinnati Shriners Hospital, Kim was very concerned with her daughter’s future mobility; she saw Katie struggle with balance and feared she might still need to have toes removed. Chief of Staff Petra Warner, M.D., FACS listened as Kim shared the previous surgeon’s prognosis and responded, “Oh, please don’t let anyone cut off your baby’s toes!” She later explained, “In contraction cases, the toes can be pulled out of place, but restoring them usually isn’t complicated.”  Kim was thrilled and relieved to hear the news.  Dr. Warner proceeded with the surgery, and in a few days when the bandages were removed, Kim remembers being moved to tears.  “I don’t usually like to use this word, but it was the first time her foot looked ‘normal’,” she said.

Katie is six now, and has had seven surgeries, four of which are considered major procedures– two on her foot and two on her left thigh.  Pediatric burn injuries nearly always require multiple surgeries to release scar tissue as the child grows.  Katie has also had laser treatments to smooth scarring.

As she gets older, Katie will need additional releases, but thankfully her mother made the call to Cincinnati Shriners Hospital.   Because of the specialized burn expertise of Dr. Warner and her team, Katie’s toes were saved and she can now run and play like any other child.

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Justin’s Story

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Justin was just 11 months old in the winter of 1998 when he sustained a serious burn on his hand from a humidifier hidden behind the sofa.  “I remember that scream to this day,” his father Ed recalled emotionally.  He and wife Cheryl took Justin to an Akron, Ohio pediatric hospital, where a specialist was brought to treat the boy’s injury.  The family had just purchased a new home, and the $32,000 out-of-network medical bill was challenging.  Knowing Justin would need further surgeries weighed on Ed and Cheryl.

The next summer, the family visited a local fair.  Northern Ohio is as hot in the summer as it is frigid in the winter, so when they came upon a trailer marked, “Air Conditioned Exhibit” they ducked in.  The exhibit displayed Shriners memorabilia, a subject with which Ed was familiar, coming from a long line of Masons.  As they browsed and cooled off, one of the Shriners said, “Do you know any children with burns?”  Needless to say, they were stunned by the coincidence but learned more about the Cincinnati hospital that specialized in pediatric burn treatment.  Later, Ed and Cheryl talked.  “I said to Cheryl, ‘I think it’s for people who have no money,’” Ed said of Shriners Hospitals.  But their first visit to Shriners Hospitals for Children–Cincinnati convinced them it was exactly where Justin belonged.

The evening they arrived at the hospital, the family was given a tour.  The sounds of happy children playing in the Child Life area got their attention.  Looking in, the sight of patients with severe scarring from large burns took Ed by surprise.  He worried that they would be taking resources from those more in need, and haltingly said, “We don’t belong here…”  The nurse responded, “You love your son, don’t you?  Don’t you want the best care for him?”  The answer was obvious, and Justin was scheduled for surgery.

Ed and Cheryl were stunned by the superior skill and expertise in pediatric skin grafting in contrast to their first experience. Justin’s surgery not only advanced his progress, it vastly improved the results of his initial treatment.  “It looked like art!” Cheryl commented about the Cincinnati Shriners Hospital surgeon’s delicate handiwork.

Today, Justin is a tall, 20-year-old student and football player at Youngstown State University, and recently had his last of five surgeries.  Both he and his family have become cheerleaders for Shriners Hospitals, recommending them friends, families and even strangers in need of the superior skill and care.  Justin shared a conversation he had with one of his coaches recently.  “He asked me why I didn’t have the surgery somewhere local,” Justin recalled. ”I said, ‘You don’t understand.  Cincinnati Shriners Hospital is the best burn hospital in the world– period.  I’ve been going there since I was one, and I wouldn’t go anywhere else.”

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The Newsome Twosome’s story

It was a bittersweet moment when we were told our twin boys would both be born with a cleft. The day after our sweet boys were born, I posted on Facebook and announced to everyone that the boys were born with cleft lip and one also had a cleft palate. Once I made the post, a friend’s brother, who is a Shriner, saw it and immediately said, “Shriners Hospitals for Children can help.” He met me at the hospital, we filled out the paperwork and the rest – is history! We arrived in Cincinnati just a few months later. The staff was amazing! They made what was a very difficult time so much easier. We can never truly thank Shriners and Shriners Hospitals for Children – Cincinnati for all they have done. Words and even actions will never be able to show the world the change they have made by providing our sweet boys with a better quality of life!

– Barbie Newsome Mother of Ty and Colton

Wu’s story

Patient finds family and healing after tragedy

In January 2008, when she was 11 years old, tragedy struck Wushuang – her friends call her Wu – and her family. Their house in Fuyang, a city in the Anhui province of China, caught fire. “I was curled up in a ball, screaming as the fire was surrounding me. I remember being covered by something,” said Wu. “Later, as I was thinking about that day, I realized that it was my mom who covered me with her body. She sacrificed her own life to save mine.” Wu had burns over 80 percent of her body and spent the next several months in a Chinese hospital, undergoing multiple surgeries. Her father was told not to expect his daughter to survive. But he did not give up hope, and in July 2008, Wu was brought to Shriners Hospitals for Children® — Cincinnati for lifesaving treatment.

Traveling to treatment

Wu traveled to America alone, scared and not knowing a single word of English. As she began her eight years of treatment, and endured numerous surgeries at the Cincinnati Shriners Hospital, she learned her first English word: pain. “Those first few months were the worst,” said Wu. Wu stayed with a host family during her time in the U.S. Over the years, she formed relationships with several families, friends and a special group of moms in her Batesville, Ind., community. She managed to attend high school, master the English language and graduate with honors, all while continuing treatment, including surgeries, at the Cincinnati Shriners Hospital. During her treatment, Wu traveled back and forth to China four times. She carried with her not only the emotional sadness of losing her mother, but also the heavy burden of many physical limitations and disabilities due to her burn injuries.

Looking to the future

Wu, currently 19 years old, sees life in a totally different way now. “I’m unique, which corresponds with the meaning of my name – Wushuang – one and only, unparalleled,” she said. Wu’s dream is to have a career in the medical field and help others who are struggling. She says it is her way of honoring the memory of her mother and the many health care professionals who have cared for her over the years. She is well on her way to achieving that dream. Wu has received a student visa and has been accepted by Marian University in Indianapolis, Ind. With scholarships and other assistance, Wu has more than half the funds needed to attend Marian University. Her amazing surrogate moms are fundraising for her and started a YouCaring crowdfunding page to help her fulfill her dream.

After years of treatment at the Cincinnati Shriners Hospital, Wu is now looking forward to college and a career in the medical field.

Mollie’s story

Mary oversees the school nursing department for her Oakwood, Ohio school district. As a nurse, she assumed she knew about Shriners Hospital for Children — Cincinnati. “I always thought of it as the ‘burns’ hospital,” she said. So when Mary attended a presentation by Debbie Harrell, RN, MSN NE-BC, the hospital’s Director of Professional Relations at the Southwest Ohio School Nurses conference, she was surprised to learn there are many conditions treated at Cincinnati Shriners Hospital, and that one of the offerings is corrective pediatric plastic surgery. She discovered that Shriners Hospitals would treat physical issues that damaged a child’s self-esteem or caused bullying, like her teenage daughter Mollie’s very large breasts.

Many private insurance companies consider breast reduction surgery a cosmetic procedure. Shriners Hospital for Children—Cincinnati recognizes that a child’s quality of life shouldn’t depend on an insurance company’s approval.

“Since about her sophomore year in high school, Mollie would wear big shirts to hide her chest,” Mary explained. “She didn’t want to go to dances because she couldn’t wear the clothes in the teen department; she had to wear women’s sizes.” Mollie was active in sports, including cross-country track and basketball, and running was difficult and painful. She struggled with depression as a result of her appearance and discomfort.

When Mary learned that Cincinnati Shriners Hospital could offer her daughter a life without pain and embarrassment, she and Mollie talked about whether surgical breast reduction might be a solution.

They made an appointment to see Dr. Allison Lied, MD FACS at Cincinnati Shriners Hospital. “It is typical of girls with enlarged breasts to complain of shoulder, neck and upper back pain,” Dr. Lied explained. “They may avoid activities that make them extremely embarrassed, such as swimming, running or dancing. I have even seen young girls homeschooled because of severe embarrassment of their large breasts.” After speaking with Dr. Lied, Mollie made the decision to have the breast reduction surgery.

The first night was uncomfortable, but both Mary and Mollie say they couldn’t have asked for better care than they received at Cincinnati Shriners Hospital. “She was wonderful,” said Mary of Dr. Lied. “Conchi, Colleen . . . they were all so great,” Mary gushed as she tried to remember each name.

Eight weeks after her surgery, Mollie is now preparing for fall semester at the University of Cincinnati, armed with new confidence and self-esteem because of the expert care and unique compassion provided by the staff at Cincinnati Shriners Hospital. “It is rewarding to see the girls have a new sense of confidence postoperatively,” Dr. Lied added. And Mary now has a new tool in her arsenal as a school nurse. “Any family I see with a need, I now tell about Shriners Hospital for Children—Cincinnati. They aren’t just a burn hospital!”

Max’s story

When Max was born on September 22, 2012, Becky remembers seeing the faces of the delivery staff and knew something wasn’t right. Then she heard the doctor say, “Baby boy has a cleft lip.” After that everything was so rushed; they had to transfer him to another Florida hospital more equipped to handle his serious condition.

Becky and her husband, Hunter, spent time learning about cleft lip and palate while Max was in the hospital; when he came home later that month, they educated friends and family about his condition.

In February of 2013, Max had surgery to correct his cleft lip. Though the surgery went well, “the stress and financial burden it placed on our family made our anxiety even worse,” Becky said. They joined a support group to stay educated and make friends who understood what they were going through. It was there where they learned about Shriners Hospital for Children — Cincinnati.

Shortly after reaching out to Cincinnati Shriners Hospital, Becky received a call back and felt a huge weight lift from her shoulders. “They told me what Shriners does and how they can help our family,” Becky recalled. From the moment she and Max arrived for their first appointment at Cincinnati Shriners Hospital, Becky knew this was where they belonged. “It didn’t feel like we were just being cycled through a system,” she said. “Everyone was great, from security to the doctors, nurses and even the cafeteria staff.”

They met with Dr. Brian Pan, who created a plan for Max’s continued care, including surgery to repair his cleft palate. Becky immediately knew she could trust him. “During this process we’ve met a lot of doctors,” she said. “Dr. Pan is the most genuine and caring doctor we have encountered.”

Max will continue to visit Cincinnati Shriners Hospital for treatment as he grows. “The care that they provide at Shriners Hospital for Children – Cincinnati is fantastic, for Max and all the children. It’s just an amazing organization.”

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