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Ten Kids Changing the Future of Pediatric Healthcare

Sixty-two children enter a Children’s Miracle Network Hospital for treatment every minute. One in six kids in America has a mental illness. One in ten has a rare disease. Each of these statistics is staggering. Our kids will get sick, our kids will get hurt, but when our kids, families, and communities need to heal, that’s when our children’s hospitals step in.

But children’s healthcare is underfunded, and kids can’t wait while the funding debate continues. These ten kids know the important role children’s hospitals play in the lives of kids and their families, firsthand. They’re all changemakers who strive to help kids like them: Bella is an advocate for people with mental illness, Chloe raises money for her children’s hospital through a lemonade stand, and Mo is the first person to ever read the announcement of an NFL draft pick in braille. As ambassadors for Children’s Miracle Network Hospitals, they’ll spend 2020 advocating for change and sharing the importance of donating to your local children’s hospital.

These kids, and the millions of others in local communities, are what inspire the Miracle Network Dance Marathon movement and the fundraising that is done by college and K-12 students throughout North America.

ALEXIS:

Alexis Simon was just 10 years old when she was hit by a car riding her bike near her home.

Rushed to an acute care hospital, Alexis underwent seven hours of surgery. She suffered a traumatic brain injury, a fracture of her C7 vertebrae, a broken leg, a ruptured spleen and needed multiple skin grafts.

When Alexis first arrived at her children’s hospital for care, she was in so much pain that she couldn’t stand to be touched – she had to learn to walk all over again. She began intensive therapies including cognitive, occupational, and physical therapy.

It’s been six years since Alexis’ tragic bike ride. Now a full-fledged teenager, Alexis is an accomplished performer, having performed off-Broadway. Alexis still bears the physical scars of her accident on her face, shoulder and arm but doesn’t let them bother her. She’s proud of her scars and uses her voice and story to advocate for kids like her.

VINNY:

When Vincent’s mom, Amanda, started a toy drive for pediatric patients at Ascension Via Christi St. Francis, she had no idea her son would benefit through those types of donations through Children’s Miracle Network Hospitals.

Vincent had a rough start. As a baby, he was often sick and saw several doctors and specialists in an effort to get to the bottom of his health issues, many of which involved respiratory issues such as a respiratory syncytial virus (RSV) and breathing issues.

At the age of 7, Vincent was diagnosed with cystic fibrosis along with pancreatic insufficiency.

Cystic fibrosis is a genetic disease that causes a thick buildup of mucus in the lungs, pancreas and other organs. In those with pancreatic insufficiency, food isn’t properly digested, usually resulting in the person having extreme weight loss or difficulty gaining weight.

Vincent needs to take in 10,000 calories a day to counteract the energy his body expends in trying to breathe.

On an average day, Vincent can take on average 40-60 enzyme capsules a day to manage his cystic fibrosis and related conditions.

Even though Vincent has a lot of health challenges, he’s involved in a running club and other sports-related activities at his elementary school. He’s also an accomplished artist and has plans of working for Marvel one day.

After Vincent’s diagnosis, Children’s Miracle Network Hospitals helped the family purchase a special vest that vibrates at a high frequency to help break up the mucus in Vincent’s chest. The family also receives funds, directly from Children’s Miracle Network Hospitals donations, which allow them to travel to Kansas City to see a specialist.

AUBREY:

Aubrey is quite accustomed to titles. Among them: 2017 Mississippi Miss Amazing Preteen, Oxford Mayor for the Day and Children’s of Mississippi Kid Captain for Ole Miss’ 2018 football game against Auburn.

Now Aubrey is taking on a new title: Children’s Miracle Network Hospitals Champion. In her role, Aubrey will advocate for the charitable need of children’s hospitals across the United States.

When Holly and Brad Armstrong were expecting their second child, Aubrey, they didn’t know she would be born with any special needs.

Despite the diagnosis, early intervention through Aubrey’s children’s hospital has made a world of difference, said Brad. Aubrey functions extremely well as a child with Down syndrome.

Physical therapy, occupational therapy and speech therapy have been part of Aubrey’s care, and she continues to see specialists in otolaryngology, endocrinology and ophthalmology through the children’s hospital.

Donations to Aubrey’s children’s hospital have helped support a new expansion. This expansion will include new surgical suites and expanded clinical space, which will benefit Aubrey and kids like her.

Aubrey radiates positive energy and never shies away from the spotlight. She’s even been raising funds for Children’s Miracle Network Hospitals for several years through her own lemonade stand.

NOAH:

Six-year-old Noah Kelly finished Bible study at his Nashville church and asked to play soccer outside with his friends before heading home. As Noah’s mom, Rufta Aron, said goodbye to friends, Noah reached inside a bush to retrieve the soccer ball and touched a live electrical wire. One second. One-touch. Lives forever changed.

Noah received life-threatening electrical burns over much of his body. Noah’s friends all started screaming, “fire, fire,” but there was no fire. Noah’s mom began CPR, during which she pulled a melted wire out of his mouth.

Noah’s mom, her friend, and another church member took turns performing CPR, and finally got a faint pulse. The paramedics arrived quickly and tried to stabilize Noah before transporting him to his local children’s hospital. Noah’s mom had his shoes. They had melted. Everything smelled like burned wire. The Pediatric Emergency Department team quickly determined that Noah was burned over 40% of his body, particularly his right arm and hand, the back of his head and the entire back of his body.

It was the worst electrical burn they had seen. Noah’s burns were severe enough to require amputation of his right arm while he was in the Pediatric Intensive Care Unit (PICU). The burns to his head required the removal of dead tissue including his scalp and skull bone. It was about a week before Noah was stabilized in the PICU. After one month in the PICU, he was transferred to the Burn step-down unit where he stayed for more than three months.

Noah’s total hospital stay was 145 days—just shy of five months. People with severe burns may require a lifetime of procedures and physical therapy. Noah required about 15 skin grafts.

Today, Noah has a prosthetic arm, loves his dogs, music, superheroes and playing games. He also has an eclectic taste in food. He loves sushi and Ethiopian food. His mom says, “He’s not your typical 8-year-old.”

BELLA:

Although Bella lives a pretty “normal” teenage life – she works, enjoys shopping, and hanging out with friends and family – she struggles with psychological disorders that millions of people struggle with across the nation.

Since she was young, Bella struggled with fear and anxiety which began to impact her day to day life, primarily in social settings and in school. After exploring other psychiatric facilities, Bella’s parents believed they exhausted all of their resources and they turned to their local children’s hospital, where she learned how to engage healthy coping skills and self-awareness

Bella will continue to have her struggles, but she sees her time at her children’s hospital in treatment as the key to her success today. She spends far more time talking about her future, believing in herself and accepting the support of her friends, family and professional support group. Best of all, she’s planning for the future and she is determined to use her story and experience to help break down the negative stigma that surrounds mental health in the country.

Because of Children’s Miracle Network Hospitals donations, Bella’s children’s hospital is equipped with the technology and resources needed to support patients like Bella every day. Children’s Miracle Network Hospitals funding has also assisted in financially supporting therapeutic programs, continued schooling for the patients, and renovating areas of the hospital to provide patients the safe, therapeutic, and nurturing environment they need.

DEVIN:

Devin Rodriguez is tough. He loves to dress as the Predator, the fearsome alien from the popular film, and attend conventions where super-fans gather to show off their costumes. But it’s only after he removes his mask that people understand how strong he really is: He’s a cancer survivor.

At first, his parents suspected a bladder or urinary tract infection. Tests at a local community hospital came back negative, and the doctor sent him home. But they knew something was wrong. They took Devin to the emergency room, where an ultrasound revealed a mass and Devin was rushed to his local children’s hospital. Tests revealed Devin had stage IV rhabdomyosarcoma in his bladder, which had spread to his prostate, lymph nodes and lungs. Treated with radiation and chemotherapy, he spent much of the next year at the hospital.

Devin’s time at the hospital was made easier by by Child Life Services, which are funded by donations to Children’s Miracle Network Hospitals, including making slime and animated movies, meeting professional athletes, and playing drums during music therapy.

Devin’s last chemotherapy treatment was in the summer of 2017 and he has since been declared no evidence of disease. Today, Devin loves baseball and plays pitcher and outfield on his local team.

CHLOE:

In the summer of 2016, the Lam family’s world was turned upside down by their 10-year-old gymnast. At 1 p.m., Chloe Lam was showing off her backflip at school. By 3 p.m., she arrived home, announced she was exhausted and collapsed on the living room floor. Chloe woke up from her nap an hour later with a 104-degree fever and a pounding headache.

Chloe was rushed to her local children’s hospital. After some initial tests, doctors thought Chloe had strep and sent her home with antibiotics. But Chloe’s condition worsened. That’s when her parents called 911 and Chloe returned to the hospital in an ambulance. Doctors rushed to pump her with fluids and antibiotics as she was severely dehydrated, and her blood pressure was dangerously low.

After two days in the Pediatric Intensive Care Unit (PICU), doctors figured it out. Chloe had an extremely rare strain of strep. This invasive strain of bacteria was emitting toxins into her bloodstream and had transformed into toxic shock syndrome, a rare reaction that can turn lethal if not caught in time. Once pinpointed, it can be treated with the correct combination of antibiotics.

Chloe’s parents are certain that the team of doctors and caretakers and their children’s hospitals is what saved Chloe’s life.

EVAN:

Evan is no stranger his children’s hospital.

When Evan’s mother was 20 weeks into her pregnancy, physicians diagnosed Evan with spina bifida, a defect effecting the spinal column, which occurs when the spine and the spinal cord don’t form properly.

Once Evan was born, he was rushed to his local children’s hospital for a life-saving surgery closing a hole in his back. For the first few years of his life, Evan would have multiple surgeries including surgery to provide Evan with a trach and a feeding tube after he had trouble swallowing.

Thanks to donations, Evan is an active boy who walks, swims, loves to fish, canoe and plays baseball for the Miracle League, an inclusive sports league in Arkansas. Despite what many people would view as setbacks, Evan’s positive attitude doesn’t let any obstacle stand in his way.

With nearly a decade worth of visits to his children’s hospital, Evan and his family are thankful to receive care close to home now that donations have helped support a new, additional children’s hospital location even closer to home.

LIBBIE:

Libbie runs triathlons, but she was born with dislocated knees and club feet.

Libbie’s parents adopted her from China, and when they met her for the first time, she was unable to walk because of her condition. She had to “scoot around” on the backs on her knees to remain mobile.

Libbie has Larsen syndrome, an orthopedic disorder that affects the development of bones throughout the body and causes a range of abnormalities on the bones and joints. Libbie was born with dislocated knees and elbows, as well as other symptoms.

Upon arriving in the United States, her parents took her to her local children’s hospital where she had multiple surgeries. Libbie is now walking and running, on her own two feet.

MO:

Anyone lucky enough to spend a few minutes with spirited Mossila “Mo” would never know that he is battling cancer for the fourth time.

His mother, Sonsy, first noticed something wrong with Mo when his eyes appeared white in a photo taken at a family gathering in 2006. Specialists at his local children’s hospital diagnosed Mo with bilateral retinoblastoma, a malignant tumor of the retina. Sonsy and Mo spent four months in Houston, where Mo was treated with proton therapy.

Four years later, he found a “bump on my neck.” Physicians diagnosed Mo with a malignant tumor, and he received aggressive chemotherapy, radiation and a bone marrow transplant in early 2013.

Mo remained in remission for the second time until the spring of 2017, when he fell in gym class and the pain in his leg wouldn’t go away. After a visit to urgent care, Sonsy brought Mo back to his children’s hospital, where scans revealed cancer had again returned — this time in his right leg and both lungs.

Mo underwent aggressive chemotherapy for both his leg and lungs, in addition to receiving a knee replacement to remove the tumor from his bone. Just before Christmas 2017, Mo began having seizures — a side effect of the chemotherapy. Doctors placed him in a medically induced coma for about one week to allow his brain and body to rest.

In mid-February 2018, Mo underwent the first of two surgeries to remove the tumors from his lungs. Then in 2019, Mo received the devastating news that cancer had returned. Despite this news, Mo remains as resilient and hopeful as ever.

“When I grow up, I want to be a doctor for kids,” Mo says.