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.
Chronic lung disease, medically complex
Alexander and his twin sister Nora arrived at just 25 weeks. Incredibly, Alexander weighed just 13.8 ounces—his sister weighed slightly more. As micro-preemies, there were many medical issues, but the most concerning was their underdeveloped lungs. After months on respiratory support, they were diagnosed with chronic lung disease
"A respiratory infection in the spring used up their energy reserves. In July they suffered respiratory failure," recall Alexander's parents, Sarah and Andy. "Nora never fully recovered and passed peacefully in September." Miraculously, her little brother started to turn a corner. Alexander survived and after 466 days in the hospital they got to take him home.
The toll this takes on a family is hard to imagine, but Children's Miracle Network Hospitals® at Gundersen Health System understands and was there to provide help during their time at the hospital. "CMN Hospitals gave us meal vouchers almost daily while our babies were in the Neonatal Intensive Care Unit. We also received gas cards and travel reimbursements," Sarah explains.
Alexander, now age 4, is medically complex with delays in growth, speech, eating and motor skills. A mechanical ventilator supports Alexander's breathing. Lungs continue to develop up until about age 7, so his parents are hopeful that someday Alexander won't need the ventilator.
CMN Hospitals continues to help. "They have made our lives easier and his life better by helping us get him to therapy and to get in-home equipment to work on balance, strength and motor coordination," Sarah explains.
Alexander's family celebrate the small victories and are hopeful. He shows steady growth and progress in all aspects of development. He has a zest for life and is always ready to work at his therapy appointments.
According to his parents, "Alexander's smile lights up a room. He is all boy, obsessed with trains and vehicles, and he loves to run and roughhouse. He is a miracle by any medical measure, and we can't wait to see what he does with his life."
Optic Pathway Glioma (cancer)
What is that spotted in Gundersen's Pediatric Oncology Unit? Is it a bird? Is it a plane? It's Superhero Cara!
"We started putting her in superhero costumes when we go to treatments because chemo can't keep a superhero down," say Rebecca and Erin, parents of 2-year-old Cara. Superhero Cara is battling one of the evilest villains: cancer!
But Cara and her family has a league of supporters helping her fight this medical evildoer. There's a team of Gundersen pediatric specialists and Children's Miracle Network Hospitals.
"Children's Miracle Network Hospitals is important in our community because it helps take some of the burden off the family's shoulders and allow them to give all their focus and attention on their child," says Rebecca.
In 2019, Cara was diagnosed with optic pathway gliomas—tumors in and around the optic nerves, affecting her vision. If that weren't enough, there have been bumps along the road in her treatment. She developed neutropenia, a condition when her white blood cells—which help the body fight infection—often drop too low for chemotherapy. Cara also has seizures.
All this means frequent trips to Gundersen for treatments and tests. CMN Hospitals has stepped in to provide the family with gas and meal vouchers. CMN Hospitals also supplies toys, games, crafts, wagons and more to Gundersen's Pediatric Cancer Center so kids, like Cara, have fun things to do to distract them while undergoing cancer treatments.
"As parents of a child with cancer, we want to do everything we can to take away Cara's pain and fear. While Cara's tumors are stable—and stable results are good— we continue to hope for more," Rebecca says.
Her mom says Cara is strong, spunky and likes to dance and run around the oncology floor saying hi to everyone. Just what you might expect from a 2-year-old superhero.
Rare, medically complex genetic condition
"Emerson means ‘brave and powerful,' and she is nothing short of that," say Emerson's parents, Kristen and Tyler.
When Emerson was born, at first everything seemed normal. "My pregnancy and delivery had no complications. Emerson was breathtaking from the moment we laid eyes on her. From her blonde hair, beautiful blue eyes and unique personality, she stole hearts."
But as they soon learned, Emerson has a rare, medically complex genetic disorder. A cleft palate, digestive problems, hearing and vision issues, foot deformity, seizures, developmental delays and mobility problems are just some of Emerson's challenges.
Children's Miracle Network Hospitals was involved from the beginning, when Emerson spent her first 25 days in Gundersen's Neonatal Intensive Care Unit. "They provided meal vouchers for the Cafeteria so we could stay close to our baby. Meal vouchers may not seem like much but take it from a sleep-deprived mom who could not recall the last time she ate a hot meal…meal vouchers are heaven!" Kristen recalls. "A gas card also helped us with frequent trips—about 30 miles each way—to the hospital and medical appointments."
CMN Hospitals has also helped with a variety of other items including adaptive seating, a harness, a device to protect Emerson's feeding-tube, transportation, and help offsetting the cost of some medication.
"CMN Hospital continues to be by our side. To have a financial burden lifted off our shoulders is a huge blessing. Beyond the financial support, they have given us emotional support during a difficult time in our lives," explain Emerson's parents.
Emerson's family are thankful for the many lessons Emerson has shown them. Her mother says, "Emerson teaches us to love and laugh, to have compassion, to fight for inclusion, to be strong and, most of all, to be kind. We have learned not to worry about the ‘what ifs,' but to be in the present and enjoy Emerson for the unique gift that she is.
Lissencephaly, Lennox-Gastaut Syndrome (Epilepsy)
"All the tests came back normal, so we breathed a sigh of relief. But in the back of my mind, something didn't feel right," recalls Stephanie when her daughter Mackenzie was born with a small head circumference. "We were unaware of the challenges that life was about to throw at her."
Stephanie's instincts were right. Within a few months, Stephanie and her husband Patrick noticed Mackenzie was not hitting early developmental milestones. Suddenly, at 5 months old, Mackenzie started to have seizures.
Mackenzie was diagnosed with lissencephaly, a rare neurological condition where the brain doesn't develop properly. In addition, she suffers from a complex and severe type of epilepsy.
"After the initial shock of Mackenzie's diagnosis, we decided to get her the best resources to help her reach her full potential. We want her to have as happy and healthy of a life as possible," Stephanie recounts.
Sharing the same goals for Mackenzie, Children's Miracle Network Hospitals was there to help. "CMN Hospitals provides much-needed support, filling the funding gap that often exists for families. That safety net has been a relief to us," Stephanie explains.
Due to her conditions, Mackenzie has had numerous surgeries along with medications and diets to control her seizures. CMN Hospitals provided meal vouchers and gas cards while Mackenzie was hospitalized and helped remodel a bathroom in the family's home to make it wheelchair accessible.
"Now Mackenzie's doctor has recommended implanting a device to reduce the frequency and length of her seizures, hopefully with less medication. CMN Hospitals is providing a gas card for the trips to Madison and meals while we're at the hospital. We greatly appreciate the help," say Mackenzie's parents.
Despite the challenges she faces, Mackenzie is thriving. Her parents say, "Lissencephaly can be extremely severe, or so mild that children go on to lead normal lives. Mackenzie falls somewhere in the middle, and we were told she would write her own book. There's no manual on what to expect. She's driving and we're just along for the ride."
There's a popular saying, you should march to the beat of your own drummer. For 12-year-old Matt, his "beat" lies in Christmas and Halloween music—which he likes to listen to year-round. Matt has learned to follow his own rhythm of life as he's overcome many challenges.
Matt was born with Down syndrome, a hole in his heart and other medical problems. But Matt has the love and support of a great family; a team of dedicated medical specialists; and Children's Miracle Network Hospitals®.
"Matt is now 12 years old and in 5th grade at Melrose-Mindoro Elementary School," report his parents Kim and Jeff. "His health has stabilized, so he's just seen for physicals and in otolaryngology." But that wasn't always the case.
In the first few years of his life, Matt had multiple surgeries for adenoids, tonsils, blocked tear ducts and to repair the hole in his heart. He also needed a feeding tube, ear tubes and ankle braces, and he suffered respiratory problems including bouts of pneumonia.
There have been many doctor visits, urgent care visits and late-night ER trips. Thankfully, CMN Hospitals was there to help.
"CMN Hospitals provided meal tickets during hospital stays and gas money for travel to and from doctors' appointments. They also helped with music therapy and an adaptive tag-along tricycle so Matt can go on family bike rides," Kim recounts.
Child life specialists have assisted Matt and his parents during procedures and tests. "They've gone out of their way to distract Matt and make him as relaxed as possible," says Kim. Child life specialists at Gundersen are also funded through CMN Hospitals.
His parents describe Matt as funny and a kid who loves music, reading books and playing games with his family. He also thinks mummies, zombies and witches are "cool." Clearly, Matt is someone who's perfectly happy marching to the beat of his own drummer.
Five-year-old Everly finds joy in life's simple pleasures like swinging, swimming and dancing the hokey pokey. Given her difficult early days, her ability to find joy in the little things is inspiring.
Everly was found abandoned in China when she was 2 months old. She was taken to an orphanage where they determined she had Down syndrome. The orphanage was very understaffed and had horrific conditions.
"When Everly was placed in our care at 20 months of age, she was just learning to sit up. She hadn't yet been given solid food, had been fed from a bottle propped between the slats of her metal crib, and her feet had never touched the ground," recall her parents, Sarah and Ken.
Despite all this, her family describe Everly as "determined." So, too, are her parents.
"When we arrived home, we put together a team to get her on the right path. We added therapy from the Birth to 3 Program to build up her core strength. Everly often fell asleep during therapy because her body wasn't used to working and having people engage with her," they say.
Everly's "team" included specialists in cardiology, ophthalmology (vision), otolaryngology (ENT), dermatology, gastroenterology (GI), orthotics and pediatrics. Children's Miracle Network Hospitals was also on team Everly.
"CMN Hospitals made it possible for our family to safely go to events together by funding a large wagon stroller. Having three children with complex medical needs, we can now go to a park, museum or zoo safely, and our children have a place to sit when they are tired or overstimulated," Sarah explains. "CMN Hospitals helps families bridge the gap between what we need to improve the quality of life for our children and what insurance or our own money can provide."
All that determination is paying off. Everly's parents report, "She is learning to walk and learning to use a core board to communicate. She has come so far since she's come home."