Meet our 2024 CMN Heroes!
Each year, Children’s Miracle Network Hospitals at Gundersen Health System choose five extraordinary kids who have had a medical condition or complexity. We are excited to introduce you to our 2024 CMN Heroes – Liliana, Charlie, Zari, Luther, and Andrew!
Meet Our CMN Hero Liliana!
For the most part, Liliana is just like any other teenager. The 15-year-old Sparta High School student is into social media, drawing and popular TV shows, and she loves animals, video games and hanging out with friends. But in late 2022, Liliana realized something wasn’t right.
It started when she noticed a lump on her neck, and a few months later, she became unusually fatigued. Then the pain set in. It rippled through her arms, chest and back – so bad once that a trip to the ER was required. Several tests later, Liliana and her family found out what was causing the pain: Acute Lymphoblastic Leukemia – or B-cell ALL.
Since her diagnosis in February 2023, Liliana and her mother Wendy have been in and out of the hospital. Liliana has faced 12 hospital stays, most of them unplanned for complications surrounding chemotherapy, bone marrow biopsies, weakness in her legs, bloody noses and fevers. It all added up to an extraordinary number of trips between the hospital and home and the expense added up.
But Children’s Miracle Network Hospitals has made the journey a little easier for Wendy, providing meal vouchers for her while visiting the hospital, gas cards for travel and funding for an effective – but expensive – drink that Liliana can have. For a single mother, having these added resources makes a huge difference and eliminates that portion of a stressful situation.
“I am a single mom, depending on one income, my family lives far away and we need every available local resource to help us fight this horrible disease,” Wendy says. “CMN help has totally made a difference in our lives.”
Meet Our CMN Hero Charlie!
Bringing a newborn baby home from the hospital is the single most monumental, nerve-wracking, exciting moment every parent first experiences with their child. However, 5-year-old Charlie’s parents, Melisa and Jed, would instead recall their memory as an alarming and anxiety-ridden time of awaiting answers while their precious, new bundle of joy was struggling to breathe.
“When we came home, Charlie wasn’t eating well and his throat would cave in when he tried to breathe,” explained Melisa.
Several tests, appointments and a scope examination of Charlie’s tiny nasal cavity later revealed a diagnosis of bilateral choanal atresia, which is a blockage in the nasal cavity caused by cartilage or bone and makes it virtually impossible for a baby to breathe, especially as babies cannot alternatively breathe through their mouths until they are 6-12 weeks old.
Charlie has had many appointments through the years with Gundersen pediatric specialists, Neuroscience, Genetics and Speech-Language Pathology for a more recent diagnosis of speech delay apraxia. Melisa and Jed are incredibly grateful for the support provided all throughout by Children’s Miracle Network Hospitals in the form of gas cards to help with the commutes to the hospital, oxygen equipment and an iPad with special programs for supplemental speech therapy.
Charlie is the perfect example of what it means to be a CMN Hero: strong, brave and ready to take on the world – despite his health obstacles. And his parents and older sister, Julisa, could not be prouder!
Meet Our CMN Hero Zari!
Azaria (Zari) has had a remarkable journey in her young life – from the health conditions she’s battled to finding her forever family. She is truly an inspirational Hero.
Zari was born prematurely at around 25 weeks, and as a result, has cerebral palsy, is deafblind and has severe cognitive disabilities. It’s a lot for one child to contend with and can be difficult for her caregivers and teachers. Children’s Miracle Network Hospitals has been there to help with the challenges along the way.
As she entered her schooling years, Zari received services through Hiawatha Valley Education District from a very special teacher, Sandra. When she turned 15, a new challenge arose – finding a family who would help her thrive. Few others knew Zari and her complex needs as well as Sandra. So she stepped in, and along with her husband, Billy, formally adopted Zari.
Since then, Zari has endured many substantial medical procedures, including a 12-hour surgery to straighten her back, as she dealt with severe scoliosis. That’s on top of the sleep studies, sedated dental cleanings, hospital stays due to illness and countless other hurdles Zari’s had to move past. But Zari hasn’t simply cleared those hurdles – she’s soared over them. That’s what makers her our Hero.
Now a teenager who has graduated high school, Sandra says Zari is a happy, affectionate and funny young lady who “has brought so much love and enjoyment to our lives.” And they’re thankful for all the help Children’s Miracle Network Hospitals has provided throughout the journey, which includes medical equipment for their home and portable equipment to help her travel to see relatives.
“We use every piece of equipment and are very grateful to have them available to us,” Sandra says.
Meet Our CMN Hero Luther!
There are times when a parent’s intuition can sense when something isn’t quite right. That was the case with 5-year-old Luther’s parents, Hilary and Dusty. The first year of Luther’s life had passed by without him reaching any of the milestones that were typical of other infants his age, like sitting upright unassisted, crawling and taking first steps. When others would offer an affirming “every baby is different”, his parents’ gut feelings begged to differ; they knew there had to be something more affecting Luther’s growth and development.
After a referral to Neurology at Gundersen and an MRI scan, Luther’s family finally learned the diagnosis: calcifications on the brain indicating congenital cytomegalovirus (CMV), a viral infection commonly contracted at birth that often causes long-term health concerns and hearing loss in young children, which Luther had already been experiencing. Luther’s hearing loss progressed rapidly to the point of complete deafness, for which he received cochlear implants and special hearing devices.
CMV continued to affect other areas and functions of Luther’s body, including his eyesight, mobility, thyroid, nerves, and muscles. Through selective dorsal rhizotomy spinal surgery, speech, physical and occupational therapies and additional early-childhood development services, Luther has made amazing strides. He is very social, loves making friends and is no shy in the slightest! He loves animals, especially cows, and has a passion for farming with his dad and grandpa. He hopes to be a rancher when he grows up.
The Luther’s family is incredibly grateful for the support of Children’s Miracle Network Hospitals and the help they have provided throughout Luther’s medical journey. They are especially appreciative of CMN Hospitals stepping in while awaiting insurance coverage, so they did not have to worry about the expense of continuing Luther’s treatments during that very stressful time.
“CMN has been there during the most difficult time of our lives,” said Hilary. “Receiving a diagnosis and finding out about yet another procedure that is needed can be so overwhelming, but having someone there to say, ‘We’re here to help’, has made a huge difference.”
Meet Our CMN Hero Andrew!
When Andrew, 15, was diagnosed with autism at the age of 3, it never held him back for a second. In fact, the diagnosis only empowered Andrew and his family with answers to the milestone delays he was experiencing as a young toddler, and it cleared a path to endless possibilities moving forward.
“With this diagnosis, it allowed so many more doors to open for Andrew and for us to get him the support he needed,” said Andrew’s mom, Jamie, and his dad, Adam.
With the help of Children’s Miracle Network Hospitals, Andrew’s family received a grant to fund an Arena Assessment for medically evaluating for autism, which ultimately led to his confirmed diagnosis. His parents recall that once Andrew began receiving speech and occupational therapy at school, he grew in leaps and bounds – and it made all the difference.
“Thanks to support from the amazing staff in his program and CMN Hospitals, our little boy was able to find his voice,” expressed Jamie, gratefully. “We continued to watch him grow and learn so many new things and be creative.”
Andrew is described as having amazing creativity and imagination, as well as an uncanny knack for retaining knowledge. He loves learning about all things space, history and the world, and he thrives when he can share this information with others. He is known for his sense of humor and being quite a comedian, which is a great characteristic to have as an older brother to three siblings, Wyatt, Violet and Emmett.
Andrew’s family is so proud to see him thrive and grow, and they can’t wait to witness all his continued accomplishments when he heads to high school. He has always been an inspiring Hero in their eyes, and now he is for the community, too!