Our Miracle Kids and Families are the heart and soul of this organization.
No child should have to undergo life-saving treatments, and no family should have to worry about the future of their kid. However, these children continue to face the unimaginable every single day with an unparalleled bravery and constant positivity.
Meet some very special kiddos at Sacred Heart who forever inspire us to do what we do:
- In loving memory -
We first met Alison when she and her family stood on stage in February at Dance Marathon 2017. She bravely shared her story, spoke of her hopes and dreams, and danced the night away with us. Sadly, Alison passed away in January 2018 after a 3-year long battle with cancer. She was 11 years old. Alison embodied love and cared more about others than herself, especially her little brother Ethan. Alison’s shining spirit and beautiful smile lives on through her family, friends, and all of us here at Zagathon.
Maddie was born with diaphragmatic hernia and since then has had many challenges, including, reactive or small and weak lungs, a blood clotting disorder, heart and respiratory disease, and digestive complications, despite these many challenges she is full of life, fun, and energy - with a smile that will brighten anyone’s day. Maddie loves going to the hospital and visiting with all of the people who work there. In addition, her visit is not complete without walking the fish and butterfly sky bridges. A favorite memory from after her heart surgery is when Maddie and a child life specialist put a fake spider on a string with a pulley system and would lower it onto the doctors as they walked in to her room, which brought joy to them both. Despite all of her challenges she strives to grow and keep healthy in hopes of continuing to work on her GI and trying new medications, while staying persistent and making the best of each day. You will be sure to catch her on the Zagathon dance floor come March!
Early May 2014 a spunky eight year old Bella fell while at play during school recess, and no one questioned the source of the pain she felt in her ankle. However, the pain from the fall did not subside, it grew worse. Bella began experiencing progressive pain from her ankle, up her leg, and into other extremities. Bella’s parents, as would be expected, turned to the little girl’s primary physician for further investigation and answers. Standard tests revealed nothing alarming, and the family was sent home with no resolution or explanation for the little girl’s symptoms.
As the weeks progressed and Bella’s healing did not, the family became increasingly uneasy. Several more visits to the primary healthcare provider proved frustrating and ineffective in alleviating Bella’s suffering. By the end of May Bella began experiencing motor skill loss in her hands and was unable to write.
Bella and her family finally found out that Bella suffers from an incredibly rare condition called Blastic Plasmacytoid Dendrocytic Leukemia. It is a disease generally found in adult males – not children. She was one of 34 childhood cases of this type of leukemia in the world. Despite her condition, Bella remains ever strong and positive. You'll be sure to see her dancing up a storm at Zagathon this March!
In utero, doctors at Sacred Heart Children’s Hospital determined Noah’s heart wasn’t developing normally. His heart pointed in the wrong direction and, to complicate matters even more, the organs in his abdomen were switched around as well. Noah’s parents knew there was never going to be a complete fix for their son’s heart, but a series of surgeries could at least make it function.
After his first open heart surgery at just four days old, Noah suffered complication after complication and ended up staying in the hospital for three long months. By the time of his second open heart surgery at 10 months of age, his doctors couldn’t have had a better tool on their side – a 3D replica of Noah’s heart – made possible by funds raised through Children’s Miracle Network Hospitals. The replica of Noah’s heart allowed his cardiologists and surgeons to see the exact structure of the organ prior to surgery and, ultimately, modify their surgical plan to ensure the safest outcomes.
Jaxon was born at 27 weeks weighing just over 1 pound, requiring long-term specialized care in the Neonatal Intensive Care Unit at Sacred Heart Children’s Hospital. With family living far away and a sibling unable to visit the NICU, they relied on NICVIEW, a service that allows family to see newborn patients virtually. The technology allowed his mom Courtney to see baby Jaxon each time she had to go home. She shared she would wake up in the middle of the night to see how he was doing and it provided her a sense of comfort. He could even be found participating in family dinners on their TV.
Lauren is a warrior: she’s alive despite being given a 10 percent chance of survival after going into diabetic ketoacidosis. Lauren doesn’t like her situation, but the ambitious singer and dancer says, “I can live with it,” in true powerhouse form. Since her diagnosis at age 7, it’s been far from an easy transition. From painful pump changes to education sessions with her schoolmates to teach them about diabetes, it’s a lot to handle. But not enough to dim Lauren’s spirit. Her mother has called her “Sunshine Girl” since infancy because Lauren would rise with the sun, murmuring songs from her crib. Like the rays she’s nicknamed after, she’ll continue bringing energy and hope to all around her.
On July 30, 2016, after complaining of stomach pain, 3 year old Kellan was diagnosed with Leukemia. He recently completed his first round of treatment. After waiting patiently for his cultures to come back to determine if he is in remission, his family received the news they feared - his cancer has not resolved. Although, he has a 80% chance at survival, he and his family have a long road ahead. Kellan is strong willed, smart, funny, loving and most importantly a FIGHTER! You can follow his journey @Kellansbattle on Facebook.
On September 13, 2017, a freshman entered Freeman High School, and went on a shooting spree that left one student dead and three students injured, including Gracie Jensen. The bullet entered Gracie’s back, traveled through her spinal column, nicked her kidney, tore her hip flexor muscle and got lodged under her skin. Miraculously, the path of that bullet did not leave Gracie paralyzed. She underwent a week-long stay at Sacred Heart Children's Hospital followed by an extended stay at a rehabilitation institute. She has required continued physical therapy but is close to a full recovery. Hopefully that recovery will include this always-smiling girl’s return to the volleyball and basketball courts she loves.