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.

Canada

Crigler Najjar syndrome is a rare genetic condition that affects the liver and its production of a special enzyme. This causes buildup of bilirubin, which can lead to loss of motor function, brain damage, and ultimately death. Siblings Jack and Lily share this condition, causing them to fight long, hard battles for their health.

Both Jack and Lily required special phototherapy light beds to sleep in, liver transplants to survive, and will have to be on medication for the rest of their lives. Luckily, Jack and Lily’s maternal uncle was able to donate a portion of his liver to save Jack’s life, and a few years later, the same uncle’s wife donated a part of her liver to Lily.

There have been many complications with Jack and Lily’s conditions, but they have helped each other to persevere. Despite all they’ve been through, they don’t let anything slow them down for long, and are always ready to help those around them.

Donations raised in the community through Children’s Miracle Network fund innovations in pediatric transplant research that allows for a larger donor pool, more matches and more successful transplants for kids like Jack and Lily.

Olivia may only be six, but she doesn’t let anything hold her back. She runs, swims, climbs, and does gymnastics. You’d never know that she was born with hypoplastic left heart syndrome, a condition where the left side of her heart does not function properly.

Olivia had her first open heart surgery when she was six days old, and another at one month old. Her third and most recent surgery happened when she was three, and she had to spend a month in the hospital due to complications.

Though she will need to return to her hospital for annual checkups, Olivia’s condition is stable. She has memories of being in the hospital, but knows she conquered her illness. Olivia specifically remembers loving the chicken soup she ate while she was there, and has fond memories of the hospital play areas.

When you ask her what she wants to be when she grows up, Olivia is determined that she will be a doctor, so she can help others who are sick.

Community donations through Children’s Miracle Network allows hospitals to be at the forefront of research and discovery, so kids with complex conditions like Olivia get the best treatment possible.

Gabriel had some minor health issues, including an eye infection, leg pain, and a red spot on his face, but no one believed it was anything serious. His family was overwhelmed to learn that Gabriel had leukemia, and would require chemotherapy. A month into treatment, he was deemed high risk, and would need a stem cell transplant on top of radiotherapy and chemotherapy. Gabriel’s body rejected the transplant twice, and he developed blood poisoning, making recovery even more difficult.

It was a hard year for both Gabriel and his family. He endured isolation to protect him from infection, and struggled with not being able to see his sisters or friends.

Despite all the hardships, Gabriel fought courageously, never once complaining or asking his parents to go home. He still deals with the complications of his condition, but says he feels lucky to have gotten through it and has a new view on life.

Donations raised through Children’s Miracle Network fund the purchase of medical equipment such as ultrasound and MRI machines to help closely monitor the complex conditions of kids like Gabriel.

“Just because I have Crohn’s Disease, it doesn’t stop me. I can do anything.”

Though Ethan has a lifelong disease with no cure, you’d never know it. Only seven years old when he was diagnosed with Crohn’s Disease, a chronic inflammatory condition of the intestinal tract, Ethan never lets it change his bright and energetic attitude.

Ethan needs IV infusions of medication every eight weeks and he sees his specialist every four months to manage his condition. While he’s getting his treatments, he never complains. Ethan even goes to other children receiving care and makes sure they feel calm and relaxed if they are nervous. He is always thinking of others before himself.

Ethan isn’t only the toughest person in the family – he’s also the comedian. Calling himself “Funzie” from a very young age, he loves bringing smiles to people’s faces. Ethan also loves spending time with his brother and two best friends, playing sports and video games.

Funds raised through Children’s Miracle Network help purchase the specialized equipment essential to diagnose, treat and care for patients with complex conditions like Ethan.

When Abigail was four years old, she developed a bump on her head that wouldn’t go away. As time went on, one of her eyes began to droop, and doctors suspected it was no ordinary bump.

Tests revealed that the bump was actually a three-inch tumour, and Abigail was diagnosed with multisystem Langerhans cell histiocytosis; a rare condition where her white blood cells were eating away at her bones.

Abigail spent the next year undergoing chemotherapy and steroid treatments. She endured seven weeks of isolation to protect her from infections, along with many surgeries and side effects, including reconstructive dental surgery from tooth loss.

Not much is known about Abigail’s disease, so doctors are unsure of the outlook. For now, her condition is stable and relapse unlikely, so she is living her life to the fullest. Abigail fundraises for her local hospital and speaks at public events, including addressing her local legislative assembly.

Community donations through Children’s Miracle Network help purchase equipment, including specialized surgical tools, used in delicate procedures for kids like Abigail.

When Hunter’s parents took him to the hospital with a fever, they were shocked to learn that doctors determined he needed to go to a dedicated children’s hospital over 800 km away.

By the time they arrived, Hunter was on life support due to a rare, life-threatening blood disorder. His condition was so severe that doctors advised his mother that although they were doing all they could to save him, she should probably say her goodbyes.

After five days, Hunter began to show signs of improvement. He spent three weeks in the critical care unit and received over 80 blood products. He then spent another five weeks in the hospital recovering, where he had to relearn how to walk, talk, and even feed himself.

After a long, hard-fought battle, Hunter was in remission. His disease could be reactivated at any time, but he won’t let that stop him from living. He loves to have dance parties, take his dog for walks, and play games.

Donations to Children’s Miracle Network support programs like the Pediatric Transport team, that provided Hunter with life-saving transportation from his local hospital to the nearest dedicated children’s hospital.

After a year-long battle with Stage 4 Acute Lymphoblastic Leukemia and Lymphoma, nine-year-old Payton believed she was cancer-free. Only two short months of celebrating later, Payton learned the cancer had returned and she was once again in for the fight of her life.

She was only six years old when it all started. Payton’s tummy pain became so severe that she could hardly walk. What followed were numerous x-rays, tests, ultrasounds, CT and MRI scans, biopsies and bone marrow aspirations, plus many painful episodes of blood work before beginning chemotherapy for 11 months.

Having been through it before, Payton knows exactly how to beat cancer once and for all. She still anticipates an up-to-six-month stay in hospital for extensive treatment, but is set on sharing her story in hopes of showing other kids that cancer doesn’t have to be scary. Alongside her little brother, Beckham, Payton launched the “Cancer Sucks” project to fundraise and help kids like her. To date, the project has raised over $35,000 and is showing no signs of slowing down.

One day, Hilary was complaining to her older sister about a terrible headache and went up to her room to rest. Before long, her sister found her collapsed, unresponsive, on her bedroom floor.

Hilary was rushed to the hospital, where doctors discovered she had an arteriovenous malformation (AVM) that had ruptured, causing severe bleeding in her brain.  She required emergency surgery to remove the AVM and relieve the pressure.

Hilary spent days in an induced coma, with her family not knowing if she’d sustained any brain damage. Miraculously, when Hilary awoke she could move all of her limbs and immediately began working on her recovery. Though she had many complications fighting off infections, Hilary was determined to get better. Even when scarring on her brain led to epilepsy, she didn’t let it get her down.

Today, Hilary has been cleared of having any more AVMs, and has gotten back to doing the things she loves, including playing pranks on unsuspecting family members.

Children’s Miracle Network donations fund the purchase of specialized equipment such as the Medtronic Image Guidance System that allows for greater precision in delicate, life-saving procedures done on kids like Hilary.

When Morgan was 13 months old her parents brought her to the local children’s hospital with what they believed was a severe stomach flu. Bloodwork revealed that her kidneys were shutting down, her red blood cells and platelets were extremely low and she had high blood pressure. It took doctors a month to diagnose her with a rare genetic condition that required weekly plasma infusions.

Morgan has already had 10 surgeries in her young life and requires infusions of medication twice a week. At age 15 she developed epilepsy which is largely controlled with medication.

Despite all the challenges, Morgan is described as exceptional and beautiful – inside and out – by all who know her. Remarkably, she never complains.

Morgan’s family feels like their children’s hospital is an extension of their family. Morgan even learned how to walk and run in the halls of the medical day unit showing that even during treatment, happy memories can be made.

Funds raised through Children’s Miracle Network support the purchase of specialized medical equipment like the PRISMAFLEX System essential to the regular therapeutic plasma exchanges received by kids like Morgan.

 

When Logan’s mom was pregnant, she found out there was a 50/50 chance the baby would inherit her condition; Pfeiffer Syndrome. It’s a genetic condition where the soft spots of the skull fuse together before birth, affecting the growth of both his skull and mid-face.. As a result of this condition Logan suffers from hearing loss, chronic and severe sinus congestion, asthma, sleep apnea, and had complications with fluid on his brain.

Logan has endured 32 surgeries, many to help expand his skull so that his brain has room to grow, and will need more in the coming years to help his facial bones grow properly. While there is no cure for this condition, regular checkups and treatments from Logan’s children’s hospital will help him live a healthy, happy life.

Courage and a great sense of humour help Logan get through all of his treatments and surgeries without complaint. Even when he spent 3 months in hospital recovering from one surgery, he would greet each and every visitor with a big smile.

Community funds raised through Children’s Miracle Network help purchase complex pieces of equipment such as the anesthesia machines that provide life support to kids like Logan during surgical procedures.

A few days before Christmas, when his puffer wasn’t bringing him the usual relief from his asthma, Colton’s father took him to the hospital. While standing in the ER lobby, Colton collapsed. His heart stopped for 15 minutes, until the emergency team could revive him.

It soon became apparent that the lack of oxygen to Colton’s brain had a devastating effect: he needed a feeding tube, couldn’t speak, and was nearly blind. He even needed to relearn how to walk and sit on his own. Doctors thought it could take up to a year of rehabilitation therapy for him to recover, but Colton was discharged after a month, impressing everyone who worked with him.

During his recovery, Colton and his family became very close to the entire care team. They became like a second family, and it grew to be difficult to say goodbye. Even the ER doctor who saved Colton’s life came to his room when it was time to wake him up from sedation.

Donations made through Children’s Miracle Network support the availability of state-of-the-art equipment that makes the resuscitation, recovery and rehabilitation of critically ill kids like Colton possible.

 

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