Meet the Faces of Children’s Hospitals Week 2018.

Eleven ambassadors from the United States and 13 from Canada will be celebrating and sharing the charitable need of children’s hospitals, like the ones they have all received care at, during Children’s Miracle Network Hospitals second annual Children’s Hospitals Week happening March 5-11.

Representing the more than 10 million kids who enter a Children’s Miracle Network Hospital each year for treatment, meet the pediatric patients who are serving as the faces and stories of #ChildrensHospitalsWeek:

USA

Carly’s mantra is “Tiny but Awesome,” and it’s true in everything she does. While Carly leads the life of a typical second grader, participating in girl scouts, learning tap and jazz, excelling in math, and becoming fiercely independent, that’s where Carly’s “typical” ends.

She is just one of 17 kids living with progeria in the US. Progeria is an extremely rare genetic condition that causes her to age eight to 10 years each year. Children with progeria have small stature, shorter life spans and experience heart disease and stroke along with other conditions typically associated with the average aging public, occurring as early as 6 versus 70 or 80 years of age.

Donations allow Carly’s caretakers to collaborate with global experts on progeria and help pay for diagnostic equipment.

Carly loves DIY and crafting, YouTube videos, making slime, Curious George, traveling, dolls, playing school and cooking. Carly’s latest obsession is LOL Surprise dolls — collecting them, watching YouTubers unwrap them in videos, playing with them and making videos herself!

When Chloe was 5 years old, her body started aching. Many thought they were growing pains, but Chloe’s mother knew something more was wrong. It took visits to several doctors before one found her diagnosis: cancer.

After more than two years of painful treatments, Chloe is now cancer free. She visits the hospital for lab work every three months to ensure the cancer doesn’t return.

Known for her extremely vivacious, outgoing personality, Chloe lives to perform and loves dance and theater. If she isn’t an actress one day, Chloe hopes to become a doctor to help children like her. She adores her dog, Poppy, playing with her friends, and spending time with her two nieces.

Funds from Children’s Miracle Network Hospitals provided Chloe with a port for receiving oncology treatments and a vein finder machine that helped locate her veins when she received her initial diagnosis.

Christian was on the brink of blindness, but thanks to an experimental gene therapy at his children’s hospital he can see.

Christian was born with an inherited eye disease with no treatment or cure that caused him to only see bright light and blurry shapes. He would eventually lose all sight.

However, when Christian was 13 he entered a clinical therapy gene trial at Children’s Hospital of Philadelphia. Since his participation in the trial, he has seen a 75-80 percent improvement in his vision.

The gene trial was successful for Christian and many others. After Christian and his mom, Beth, testified before the FDA, they approved the gene therapy for use in patients in December 2017. It is the first gene therapy approved for the eye and for an inherited condition.

Christian is a talented singer and was a semifinalist on season 12 of America’s Got Talent, where he was awarded Howie Mandel’s golden buzzerHe has a passion for soul music and aspires to be a recording artist.

Joseph “Joe Joe” was nicknamed the “mayor of Baystate.” He earned this prestigious title after 142 days in the Massachusetts children’s hospital. Joe Joe took his duties seriously, and like any other politician, you could find him representing the facility that cared for him by talking to and entertaining others.

Treatment for Joe Joe began at 4 days old when he was diagnosed with a bone marrow disorder and mosaic Down syndrome. Today, Joe Joe and his family live in Florida where he sees several specialists at another Children’s Miracle Network Hospital receiving care for complications that stem from his initial diagnosis.

When he’s not hamming it up, you can find Joe Joe on the dance floor — breakdancing and doing “the worm” to music by his favorite rapper, Pitbull.

The specialty center where Joseph has his cardiology and endocrinology appointments was funded in part by Children’s Miracle Network Hospitals funds. Donations also paid for the Omni Giraffe beds used during his treatment.

In the words of her idol, Taylor Swift, Marlee knows how to “shake it off.”

Marlee was born missing nine of 12 ribs on her right side, causing severe scoliosis and an abnormally small right lung, leaving her unable to breathe on her own. At 10 days old, she had her first of 22 surgeries (so far), a tracheotomy. In total, Marlee spent six months at the hospital before being discharged.

Marlee has surgery every four to six months to adjust her Vertical Expandable Prosthetic Titanium Ribs (VEPTR). The VEPTR help stabilize Marlee’s spine and separate her ribs, allowing her lungs to expand as she grows.

Marlee’s prognosis is good, and she will continue to have surgeries and follow-up visits for the rest of her life. She “shakes off” any physical restrictions and enjoys climbing on monkey bars, attending gymnastics classes and jumping on the trampoline.

Several specialty areas at her member CMN Hospital treat Marlee, including the pulmonology and urology departments. CMN Hospitals donations helped her hospital attain the fifth-ranked pediatric urology department nationally in 2017 according to U.S. News & World Report.

Mateo is a happy child with a sense of adventure. His fun personality has helped him endure through three very serious illnesses: Hirschsprungs disease, short bowel syndrome and eosinophilic esophagitis.

Mateo learned to be a fighter from day one. Shortly after birth, he underwent an ileostomy, a surgery to bypass part of his intestines. Shortly after, health complications required the same procedure again. Mateo has struggled with health issues that many people will never encounter in their entire life. He spent 71 days in the neonatal intensive care unit and has had 12 surgeries during his lifetime.

Mateo’s survival defied all odds. When he was diagnosed with this disease, he had a 30 percent chance to live. Yet, he has exceeded expectations.

Today, Mateo loves Marvel superheroes, Captain Underpants books and Jake Paul YouTube videos.

“Lively” and “energetic” are common descriptors of any young boy. But Nathan’s spirited demeanor comes from deep within and with help from his hospital, as he was born with a condition that depletes vital energy levels.

Just a few weeks before his first birthday, Nathan was diagnosed with mitochondrial disease, a degenerative disorder that attacks the mitochondria — the source that creates enough energy for the body’s systems to sustain function and support growth. Nathan’s nine specialists ensure he stays on track with oxygen supplementation, daily medication and the placement of a gastric stimulator in his stomach.

While his body may not always have the proper energy, Nate’s fun-loving personality stands in stark contrast to his disease. He wants to be a comedian or late-night talk show host when he grows up. Or, if that doesn’t work out, one of the drivers at the Kilimanjaro Safari at Disney’s Animal Kingdom.

Children’s Miracle Network Hospitals dollars helped open the pediatric emergency department, and fully fund child life services and the Arts in Medicine program — all of which support Nathan’s livelihood.

Sasha suffered a stroke during childbirth. Since then she has been living with cerebral palsy.

Her children’s hospital has been her second home. From emergency admittance for seizures to check-ups to physical therapy, her children’s hospital has been there every step of the way.

Sasha found healing through art therapy during her time at Children’s Hospital Los Angeles’ (CHLA) Handy Heroes Occupations Therapy Summer Camp. She developed a love of art and discovered she loved painting on denim. As she began to enjoy creating art, Sasha, with the help of her mom, came up with the idea to give back. They established a nonprofit organization, The Sasha Project LA. One-hundred percent of the proceeds from The Sasha Project LA are donated to Children’s Hospital Los Angeles’ art therapy programs.

Sasha also enjoys activities like hippotherapy (therapeutic horseback riding) and rock climbing. She continues to attend the Handy Heroes two-week summer camp at CHLA.

Some might consider Teddy an old soul. He’s certainly experienced a lot in his young life, having already endured 35 surgeries since birth. When a nurse told Teddy he was “like an old man in a little boy’s body,” Teddy retorted, “I know! I even have back hair!” Full of life experience, Teddy’s appreciation for each day is unmatched by most kids his age.

Hydrocephalus is a buildup of fluid in the brain. This condition that plagues Teddy results in problems with short-term memory, physical deficits and other neurological conditions. While his prognosis is uncertain, he remains optimistic and appreciative of the care he receives.

Like the plush toy with whom he shares a name, Teddy wants to help other children. He believes having Hydrocephalus is life’s way of allowing him to do so. It’s a burden few could “bear,” but Teddy takes it in stride, smiling his way through the ups and downs of his treatment.

Due to the uncommonness of Teddy’s disorder, research funded in part by Children’s Miracle Network Hospitals donations heavily impacted medical professionals’ ability to care for him. Financial support also goes to the child life program that helps Teddy cope with his condition and multiple hospitalizations.

Starting preschool can be overwhelming for some 4-year-olds. For JaKiah, the hardest part was saying goodbye to her classmates when she was diagnosed with kidney cancer a month into the school year.

During her pre-k checkup, JaKiah’s primary care physician noticed swelling in her abdomen. They initially believed it was a minor infection, but soon discovered it was an advanced stage of Wilms’ tumor. While her school friends learned the alphabet, JaKiah underwent months of chemotherapy, radiation therapy and surgery.

Now JaKiah is entering year five of being cancer free, a major milestone. She is full of sass and loves to be around her friends. She will continue enduring numerous ultrasounds, CT scans, X-rays, blood work and check-ups until 2023 to ensure she remains cancer free.

Children’s Miracle Network Hospitals funds helped pay for the new 258,000-square-foot wing that houses the hematology/oncology clinic where JaKiah was treated and the healing garden where she spent days recovering.

At the age of 3, Roxie was diagnosed with high-risk neuroblastoma, a solid tumor and form of pediatric cancer. Over the course of 17 months, Roxie went through an aggressive, multi-therapeutic regimen to treat her disease. The majority of her treatment was administered on an in-patient basis at St. Louis Children’s Hospital. Frontline treatment for high-risk neuroblastoma was successful in bringing Roxie to NED (no evidence of disease). She participated in a trial study at SSM Cardinal Glennon Children’s Medical Center with the intent of keeping the disease from ever returning. 2018 marks the her fifth year free of cancer.

Today, Roxie spends the majority of her free time as a care-free fourth grader. She loves time with her family, especially when she’s playing with one or all of her three siblings. Roxie loves to sing, dance, play soccer and has a real talent for arts and crafts. If you ask Roxie what she wants to be when she grows up, without hesitation she’ll tell you, “A Doctor.” Roxie spent 2017 as the Ace Hardware All-Star Ambassador.

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