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2019-20 Heroes

2019-20 Children's Miracle Network Hospitals® Heroes

At Children's Miracle Network Hospitals®, a service of Gundersen Medical Foundation, every child served has a story of courage and perseverance. Five of these incredible kids have shared their stories with us. Read their amazing life-affirming stories below.

In many ways they are every bit as brave and resilient as the most daring superhero. Please join us and make a gift to support the future of our heroes. Thank you for helping make miracles happen.

Hunter

Hunter

Holmen, Wis.
Spinal Muscular Atrophy Type 2 (SMA2)

With the name Hunter, it was probably inevitable that one of his favorite activities is hunting. So far, this 15-year-old Holmen high schooler has an eight-point buck and a 230-lb. black bear to his credit. While brag-worthy for any kid, it's a remarkable feat for Hunter who is also living with spinal muscular atrophy type 2 (SMA2), a neuromuscular disorder.

In addition to the daily challenges of living with SMA2, Hunter has faced many surgeries. Hunter's parents Peg and Dan report, "Hunter has had several surgeries, from a gastrostomy (G-tube) placed in his abdomen, growth rods to support his spine and procedures to fight pneumonia. Hunter also has been in and out of the hospital several times a year because of respiratory problems."

For Hunter's frequent hospital stays, Children's Miracle Network Hospitals® has been there to help the family with food vouchers and gas cards.

"CMN Hospitals provides support both financially and emotionally," say Dan and Peg. "Most people don't realize the strain it puts on families when their child is extremely ill or has special needs."

In 2016, Nusinersen (Spinraza) became the first FDA-approved treatment for SMA2. It may help decrease breathing problems and other health issues associated with SMA2. With it the family is hopeful, "Hunter has been getting stronger and healthier. He still requires hospital stays a couple times a year, but with Spinraza injections he is getting stronger in his arms and is able to hold his head up without assistance."

Despite SMA2, Hunter is like other kids in many ways. He looks forward to more hunting adventures, loves to cheer for the Packers and enjoys watching Marvel movies. Hunter aspires to be an animator for Pixar when he grows up. Who knows, maybe someday he'll help animate an adventure story about a kid with SMA2 who went hunting and got himself a bear.

Julian

Julian

Goodview, Minn.
Acute lymphoblastic leukemia

The holidays are typically a happy and exciting time for most kids, but this was not the case for one little boy from Goodview, Minn. On December 23, 2015, Julian was diagnosed with acute lymphoblastic leukemia and received his first of many rounds of chemotherapy on Christmas Eve.

This would be the beginning of a long three-year battle with cancer for Julian and his family, but Children's Miracle Network Hospitals and his team of doctors at Gundersen Health System were there with them the whole way.

"Normal" for Julian has been chemotherapy, blood transfusions, lumbar punctures, frequent hospitalizations, even more frequent clinic visits and many, many missed childhood activities.

"There are so many families impacted by medical and financial issues and the combination can make the situation seem that much harder to deal with. Children's Miracle Network Hospitals helps lessen the burden of it all and provides happy experiences for children who are going through so much emotionally and physically. We couldn't be more grateful for their help," say Julian's parents, Jason and Kaitlin.

"CMN Hospitals has also provided us with numerous gas cards over the years and meal vouchers throughout every hospital stay and during long clinic visits," Kaitlin adds.

Thanks to the support of Julian's team—including the CMN Hospitals staff, his Gundersen care team, seemingly tireless parents and the amazing resiliency of a kid—he is in remission and will be done with cancer treatments on April 7, 2019.

Now Julian can focus on just being a kid—a kid who dreams of being a police officer with the K-9 unit someday. But before then he will continue to do what he loves like playing with his little brother, Jamison, starting kindergarten and everything else that a typical 6-year old boy does.

Keaton

Keaton

La Crosse, Wis.
Chronic osteomyelitis of his left foot

Keaton is an athletic 11-year old who loves to be active. Whether it's playing baseball, basketball or his favorite school subject – gym. This young man has big dreams and aspires to be a professional ball player when he grows up.

The only things getting between Keaton and the sports he loves was chronic osteomyelitis in his left foot—a serious and difficult-to-treat infection in the bone. "Last year he was fighting four different infections in his foot at one time," recall his parents Allison and Tim.

Keaton has been plagued with problems in his foot since age 5. His parents can list the many treatments including several rounds of antibiotics, a special shoe insole, multiple surgeries, implants, procedures to clean out infections, casts, walking boots, physical therapies and seemingly endless hospitalizations.

"During one of Keaton's hospital stays we learned about Children's Miracle Network Hospitals. They provided us with meal vouchers for the cafeteria. This was amazing because we were so worried about Keaton, we would forget about ourselves and the meal vouchers were very helpful," Allison and Tim explain.

They are also grateful for Gundersen's child life specialists, commenting, "They had fun projects for Keaton to do to keep him entertained during his stay. They were a godsend!" CMN Hospitals® helped develop Child Life Services at Gundersen and has been a constant supporter, providing grants for supplies, toys, books and electronics used by the kids.

Keaton also had numerous clinic visits. "Often, we were at the clinic at least twice a week," his parents remember. "With gas cards from CMN Hospitals we didn't have to worry about how we were going to get Keaton to his appointment. It was a huge lifesaver."

Allison and Tim happily report that Keaton has progressed enough that he is back playing basketball and baseball. They say, "After the summer we had in 2018 it is amazing just to see Keaton back out there playing."

Mason and Ethan

Mason and Ethan

Blair, Wis.
Prader-Willi Syndrome

Four-year old Mason and 14-year-old Ethan didn't start life as brothers, but a common bond forever links them in a special way. They share a rare genetic disorder called Prader-Willi Syndrome.

Weak muscles, sensory issues, development and cognitive delays, behavioral problems and chronic hunger are just some of the problems related to Prader-Willi Syndrome. But the boys have wonderful parents, Tessie and Grant, who see past it.

"Despite everything, Mason knows how to put a smile on everyone's face. He just makes the world a better place. We're so grateful for him," they say. "In 2017, we learned of Ethan through the Prader-Willi Syndrome Association (USA). After 14 long months of waiting, Ethan joined us in July 2018. We love Ethan and feel so blessed that he's part of our family."

Grant and Tessie say, "Making the choice to adopt Ethan was an easy one. Knowing that if we ever needed anything, Children's Miracle Network Hospitals would be there for us made it even easier."

With all the boys' health issues, there are numerous healthcare visits to Gundersen's Pediatric Specialties and other departments. This means many miles travelled and long days at the clinic. CMN Hospitals provided the family with meal vouchers and gas cards and helped with special equipment such as a car seat with temperature-regulating fabric for Mason whose body can't self-adjust properly.

"Having CMN Hospitals there to help is a huge stress reliever," the parents say. "When you wish you could do more for your child or get the equipment they need, CMN Hospitals is there to help with almost anything you need."

Like other brothers, Ethan and Mason have common interests like basketball, reading books, going to the park and playing with their toys. They love their parents and their kid brother, Maverick. But each is his own person, too. They face their own struggles, but they do this with their own brand of courage and, of course, with loving support from their family and each other.

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Every day, Gundersen Health System staff deliver great medicine plus a little something extra—we call it Love + Medicine.

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