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.
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.
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
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.
Trisomy 18, NICU
Lyla Alameida thinks it's hilarious when people trip, fall, or sneeze. Her sense of humor has carried her through a lifetime of challenges and adventures. Lyla is a fighter, having survived and even thrived after doctors told her parents to prepare for the worst when she was born. With a diagnosis of Trisomy 18, Lyla has an extra chromosome on the eighteenth pair of every cell of her body. Only half of babies born with this condition survive, and only about ten percent will live beyond their first year of life.
Lyla had kidney and bladder abnormalities that caused severe infections, landing her in the Neonatal Intensive Care Unit for twelve days after birth and in the hospital three times during her first year of life. When she was ten months old, she had major surgery to repair these abnormalities, and her kidneys have continued to improve ever since.
Lyla has broken all the rules of Trisomy 18. She is walking independently using special equipment. She feeds herself, says many words and phrases, and is happy and healthy. She pays regular visits to Gundersen Health System's Ophthalmology, Orthopedics, Audiology, ENT, and Pediatric specialists for ongoing care and therapy.
Children's Miracle Network Hospitals has played a big role in Lyla's life. They funded music therapy and an iPad that Lyla uses every day to learn, both of which have been extremely beneficial for her. They also covered expenses for Lyla to attend Easter Seals camp, which Jenny says was an "amazing experience."
"Health insurance does not cover everything these children need," says Jenny. "CMN Hospitals has allowed Lyla to experience things she never would have experienced otherwise. They have provided therapies which have allowed her to thrive and learn."
Today, Lyla loves to play catch, go swimming, watch movies, and spend time with babies. Music and singing also make her happy. She has a lot of personality and loves sharing it at school with her friends.
Acute Lymphoblastic Leukemia
Kids play hard, and with that play comes the occasional bump. When Lane's mom, Chris, saw his swollen elbow in June of 2017, she talked with him about being more careful on the basketball court. When the swelling worsened, Chris took Lane to the doctor. Several blood tests and a chilling phone call later, mother and son tearfully packed their bags, heading to Gundersen Health System's Pediatric Oncology department for the first of many aggressive treatments to address his diagnosis: Acute Lymphoblastic Leukemia.
"The not knowing was probably the worst of it," says Chris. "Not knowing what was going to happen next. Will it hurt, will he survive?"
Now a middle school student, Lane keeps up on his schoolwork from home, with weekly visits from a dedicated teacher. Frequent chemotherapy treatments leave him vulnerable to any and all viruses, and the need to avoid extra illness is crucial for Lane.
Lane is a typical kid. He loves to play video games. He follows the Oklahoma City Thunder NBA team and the Seattle Seahawks in the NFL. He dreams about becoming a child psychologist or a massage therapist someday. Chris says that Lane's attitude through his treatment has been "Really amazing—he's so grown up."
As a single mom with her own medical challenges, Chris is determined to do whatever it takes to see her child through the years ahead as he joins with his medical team to fight the battle against cancer.
Children's Miracle Network Hospitals has helped Lane and his mom, "Over and above what would be expected…they bring hope when you feel that there isn't any," says Chris. They have helped with travel expenses and food as well as emotional support through the frequent hospital stays and clinic visits. "They have the answers before you ask them," says Chris, and most importantly, "They treat my child like he is royalty. The compassion of these people is outstanding."
Maddy Frank has navigated life with Cystic Fibrosis since she was born. Keeping her lungs clear and helping her to grow and thrive have been the main goals of her parents, Melissa and Joe, and their medical team—and Maddy has approached these goals with charm and grace.
"Even when she was two years old and had to use a Vest Airway Clearance device to help clear her lungs, Maddy would have a smile on her face. She would sing during treatments because the vest made her voice sound funny," says Melissa.
Maddy's preschool years were peppered by illnesses and hospital stays as she fought off virus after infection. Her first sinus surgery when she was 3 years old led to a second procedure at the age of 5. During a CT scan to check on her sinuses, a mass was discovered at the back of her esophagus—and back into surgery she went to remove the mass. When she was 11, she was back at Gundersen Health System, this time for ten days, receiving a "tune-up," a cycle of preventative antibiotics and therapy to keep her symptoms in check.
Children's Miracle Network Hospitals has been there for Maddy and her family through every ordeal, providing meal vouchers during hospital stays, and even helped with funding to send Maddy to STEPS camp, a confidence building camp for girls interested in science and technology.
Now a vibrant middle schooler, Maddy is learning to play the piano. She loves to read and re-read Harry Potter books, and she gets a laugh out of watching American's Funniest Home Videos.
Maddy looks her Cystic Fibrosis straight in the eye. Her daily regimen still includes two hours of therapy treatments and a handful of medications, but this keeps her healthy and able to live a pretty typical teenage busy life.
"We all want the best for our kids," says Maddy's mom, Melissa. "There are so many things families of children with medical conditions need to think about and CMN Hospitals helps these families get needed equipment, supplies and resources that are otherwise not available."
Spina Bifida, Absent Leg
By the time he turned three, Jude Schipper had been through more surgeries than most people will see in a lifetime. He had also developed such a thorough love for others that his mom, Megan, warns: "Caution—Jude WILL hug you!"
Born prematurely with Spina Bifida, Hydrocephalus, and an absent left leg, Jude faced his first major surgery when he was just 15 hours old. When he was 2 weeks old, he had another surgery to place a shunt in his brain. In 2015 alone, Jude would endure 7 more shunt procedures.
Children's Miracle Network Hospitals provides much needed support to Jude and his family. During their difficult stretch of shunt procedures, the family spent many hours in the car, sometimes on unplanned trips to the hospital. They never had to worry about where the money was going to come from for gas.
"Something that seems so basic really could have been a huge burden if it wasn't for CMN Hospitals," says Megan.
CMN Hospitals also provided funding for a special wheelchair to help Jude get around, as well as an adaptive bike. These crucial pieces of equipment support Jude's physical health, mobility, and muscle development in his arms and leg.
"Jude is just one kid who is going to have a life time of needs. We could not by ourselves get him everything that he needs and is going to need in order to thrive if it weren't for the support we receive from CMN Hospitals," says Megan.
Jude loves to play ball, swim, and read books with his family. He enjoys eating noodles and cereal. While he will face significant medical needs for the rest of his life, Jude's doctors are focused on maximizing his therapies so that he can live a full life and participate in the same activities that other kids enjoy.
Type 1 Diabetes
Dawson Schultz is a busy, active boy from Rollingstone, Minn., who has an incredible memory and loves to ask the question "why." Fortunately, it was his mom, Trish, asking "why" at the right time that led to his early diagnosis of type 1 diabetes.
Having type 1 diabetes herself, she noted Dawson was extremely thirsty and urinating frequently. Recognizing the signs, she decided to test his blood sugar. When her meter wouldn't read his results, she knew it was time to take him to the doctor for further testing.
"Luckily, we caught it right away and Dawson did not show some of the other typical signs such as sickness, weight loss and dehydration. Dawson was only in the hospital overnight," says Trish and his father, Eric.
During this time he had Children's Miracle Network Hospitals by his side, providing meal tickets to his family while he was in the hospital and gas cards to help with the additional appointments.
Thanks to the great care from Kathleen Marquart, MD, pediatric endocrinologist and Linda Privet, diabetes educator at Gundersen Health System, Dawson has learned how to check his own blood sugars four to six times a day. "We are so proud of him. He is learning about his body and what his body needs through this process. He is learning how to respond and what he needs to do when he's not feeling well," says Mom.
As Dawson continues to learn about type 1 diabetes, he is enjoying all of his favorite professional sport teams in Minnesota. He knows the names, positions and numbers of every player on every team. He loves watching farming shows, and he wants to be a farmer when he grows up.
Recently, Dawson was talking to his grandpa and grandma. He said, "I know I won't have diabetes forever, because there will be a cure. My diabetes will go away without any complications."
Hometown: La Crosse, Wis.
Diagnosis: Type 1 Diabetes
According to Mandy and Curtis Bisek, their daughter Sophia was healthy until age 5 when they noticed changes they chalked up to a growth spurt.
"She was thirsty all the time, eating more than usual, and using the bathroom often. Our once energetic and happy girl was lethargic and not wanting to play as much," they recall.
At a visit to her pediatrician they learned Sophie had type 1 diabetes. With dangerously high blood sugar, Sophie was immediately admitted to Gundersen Health System. This is when Children's Miracle Network Hospitals first stepped in to help. "They provided food vouchers to keep us fueled during Sophie's hospital stay when the last thing we were thinking about was ourselves," Mandy remembers.
"We spent three days in the hospital where we learned how to care for Sophie—testing her blood sugar, monitoring everything she ate and computing the amount of insulin she needed. The hardest part was giving her insulin shots several times a day. This became our 'new normal,'" says Mandy.
The Biseks quickly realized they couldn't do this alone. But Sophie's team of Gundersen Pediatric Specialty providers, diabetes educators and CMN Hospitals made sure they weren't alone. A year and a half later, when Sophie received an insulin pump to automatically deliver the insulin she needs, CMN Hospitals was there to help with this expense.
"Our 'super Sophie' is handling her diagnosis like a super hero. She grows increasingly independent in managing her diabetes and she doesn't let it get her down," Mandy reports proudly. So like many other kids, Sophie will be off to camp this summer. There she will learn more about living well with her diabetes. CMN Hospitals is again helping with camp and transportation fees.
In addition to swimming and gymnastics, Sophie loves art and music and is learning to play the guitar. With aspirations to be a music teacher, who knows, someday this just might be Sophie's "new normal."
Hometown: Tomah, Wis.
Diagnosis: Epidural Abscess
A series of cascading health events put 11-year-old Chloe Burkhalter of Tomah, Wis., into a fight for her life on more than one occasion. But she's a fighter who never stays down for long.
It started when Chloe got a fever which spiked at 100.3. Much to the relief of her parents, Heather and Troy, Chloe's fever soon broke. But Chloe was still acting strange—not herself.
Nausea and extreme lethargy on the heels of the fever were signs her body was fighting a nasty infection. The infection spread, escalating into an intracranial epidural abscess—an infection between the skull and the top layer of tissue covering her brain.
"Chloe had emergency surgery at Gundersen Health System to remove the infection and relieve the pressure. When she woke up she had slight Bels Palsy, and needed help from occupational and physical therapy to relearn how to walk, balance, eat and even brush her teeth. We are grateful that Chloe recovered better than anyone could have hoped," say Heather and Troy. "But a few months later we found a lump on Chloe's surgical scar. It was another infection requiring more surgery."
During Chloe's hospital stays, Children's Miracle Network Hospitals helped the family with meal tickets. CMN Hospitals also helped cover the cost for home infusion training after Chloe's second surgery.
Chloe also has an unrelated heart rhythm condition. "So far," say her parents, "it has not caused many complications and is being closely monitored." While her parents are cautiously optimistic, they are also prepared. With support from CMN Hospitals, they have acquired an automatic external defibrillator (AED) to shock her heart back into rhythm in an emergency.
"Chloe has been happy and healthy since the last surgery," report the Burkhalters. She's back to being a kid—listening to music (her favorite song is Chloe, naturally), reading, art and playing with her dogs.
Hometown: Hokah, Minn.
Diagnosis: Wilm's Tumor
Justus Heise is 8 years old. Happily, at the age of 3 he became the foster child of Natalie and Dave Heise of Hokah, Minn. Two years later, they adopted him.
But the emotional scars of those early years run deep leaving Justus with trust issues and debilitating anxiety. That wasn't the only hurdle Justus had to face. "Just a few months after his adoption, we heard the worst thing a parent can hear," recall the Heises, "Justus was diagnosed with cancer."
"When we adopted Justus, we made a commitment to him that we would be his forever family. Cancer is a family disease and we promised him that he would never be alone." Children's Miracle Network Hospitals has also been there for Justus and his family so they never feel alone.
Soon after his diagnosis, Justus had surgery at Gundersen Health System to remove a kidney and biopsy several areas around the tumors. "Justus stayed in the hospital for six days. Whatever we needed, Gundersen staff, child life specialists or CMN Hospitals got it for us," recalls Natalie. "All of our meals were taken care of during our hospital stays and daylong doctor visits. We also received transportation money for our many—sometimes daily—trips to Gundersen."
For the next six months, Justus received radiation treatment and chemotherapy. By June of 2015, there were no signs of cancer. "Justus was very excited to be done with cancer and to get his life back. He was feeling well and happy," recalls Natalie. But less than a year later, cancer had resurfaced. This meant a second surgery, more chemo, more radiation, and more support from CMN Hospitals.
For now, Justus will continue to be a fighter. He loves spending time with family and going to school. When he's at the hospital he enjoys visiting his friends in the security office, and even aspires to be a police officer one day.
"We are so thankful he is ours," say the Heises, "he has taught us so much about what is important in life. His battle is not over but because of him we will continue to fight fiercely."
Hometown: Black River Falls, Wis.
Diagnosis: NICU, G-tube
Sometimes, small things can have a big impact. Blake Oldham of Black River Falls, Wis. is a prime example. Born less than 1½ pounds and about a foot long, Blake started out life extraordinarily small but now, at age 3, he leaves a big impression on those who meet him.
His parents, Alyssa and Curtis Oldham, describe Blake as resilient. He's had to be after spending the first 89 days of his life in the Neonatal Intensive Care Unit.
It wasn't long after he went home that his family was introduced to Children's Miracle Network Hospitals. When the Oldhams sat by Blake's side during a week-long stay in Gundersen Health System's Pediatric Intensive Care Unit due to extreme weight loss, CMN Hospitals was there to help with food voucher and transportation costs.
Blake has also faced an ongoing struggle with low muscle tone, developmental delays, and multiple surgeries to repair hernias and digestive problems. Because of his digestive disorders and an oral aversion, Blake is fed a diet of blended food through a G-tube—a feeding tube placed directly into his stomach. While he takes nothing by mouth, Blake still tastes new things, and like a lot of kids, has a fondness for chips, cheese and ranch flavor.
"To prepare his food every day, we use a Vitamix blender which CMN Hospitals helped us buy," says Alyssa. "They've helped us afford the equipment needed to allow our child the best opportunities to succeed."
Blake is a smart, happy little boy who attends 3K school where he's learning his ABCs. But when he grows up, his ambition is to be a doctor. In his relatively short life, Blake has spent a lot of time around doctors so he knows all about helping people.
Hometown: La Crosse, Wis.
Diagnosis: Medically Complex
"Children like Madelyn require such special care and equipment. As parents we could never afford all she needs on our own. For families who have children with special medical needs, Children's Miracle Network Hospitals® is there to provide the opportunities they deserve. It is very difficult to be on this journey but CMN Hospitals makes it a little easier."
These impassioned words come from Sarah and Greg Payne of La Crosse, Wis. While only 3½ years old, their daughter, Madelyn, has faced a lifetime of complex medical challenges. These include hearing and vision loss, seizures, developmental and mobility delays, immunodeficiency, feeding difficulties, bowel and bladder problems, and an inability to talk.
"CMN Hospitals has helped us with meal vouchers during Madelyn's numerous hospital stays at Gundersen Health System," says Sarah. "They also purchased Madelyn's Tumbleform Feeder Seat. This is used for her feedings. It also allows her to be on the floor and interacting with her younger sister, Ava."
Madelyn's many medical problems are probably a result of a rare, and likely progressive, brain disorder. Madelyn has had many hospital stays and doctor visits, and needs specialized care and adaptive equipment. For all of this the Paynes have had the support of CMN Hospitals.
"One of the most helpful things for us has been respite care funding from CMN Hospitals so we can have licensed care providers when we need to go out," Sarah explains. "They've also helped fund the palliative care appointments that allow us to plan for Madelyn's future."
According to Sarah, Madelyn is happy, easy-going and loves to be with people. Madelyn doesn't talk but she conveys a lot through her smile and laugh, which she shows off the most when listening to music. She can't walk or crawl, but Madelyn loves to be on the move whether swinging, on a bike ride with Dad or on a walk. CMN Hospitals will continue to be there every step of the way.
Hometown: Tomah, Wis.
Diagnosis: Traumatic Brain Injury
When Jesse Plowman was just a few months old, he was violently shaken resulting in a life-altering traumatic brain injury (TBI). A bright spot in Jesse's life has been his adoptive family, the Plowman's. They have fought for, cared for, cried with and loved Jesse since that fateful day.
Jesse has many developmental delays because of the TBI. At 6 months old, he started having difficult-to-control seizures many times a day. He has been hospitalized often with health problems; some nearly fatal.
"One hospital stay lasted three months, leaving Jesse so weak it erased nearly all the progress he had made. He could no longer crawl, sit up or even lift his head. His immune system was really low. They told us he may be coming home to die, but he's a fighter who had defied death too many times. We weren't ready to give up," says Robin. "For the next year I only left the house with him to go to doctor appointments. Slowly he started to gain strength; every little milestone was a miracle."
CMN Hospitals has been there along the way supplying specialized equipment to support Jesse's development. These adaptive items include an in-home jungle gym, wheelchair umbrella, specialized car seat and tricycle. CMN Hospitals also provided support for an iPad that helps Jesse with his vison and learning development.
The Plowman's are grateful: "Our family whole heartily supports CMN Hospitals. It's great to find an organization that helps so many families and also keeps donations in the community."
Jesse will be going to school full-time in the fall. He has gained so much and has even started talking. Robin says, "Our family has been blessed by this little boy. His smile is contagious, he gives great bear hugs and he is a heart stealer!"
Hometown: Trempealeau, Wis.
Diagnosis: Down Syndrome, Acute Lymphoblastic Leukemia
Shortly after Mason Rotering was born in 2010, he was diagnosed with Down syndrome. "This diagnosis was a surprise, but not a major hurdle. It just meant more patience and time to understand his needs," remembers his father, Kevin.
As is sometimes the case with Down syndrome, Mason had low muscle tone that required braces to help train his muscles and make walking easier. But once Mason learned to walk, there was no stopping him.
Then when Mason was just 3 years old, "we heard the words no parent wants to hear," recall Danielle (Danie) and Kevin. "On Dec. 22, we learned Mason had cancer. He received his first treatment the day after Christmas. I went from working overtime to ensure my children had a great Christmas, to hoping Mason would live to see his next Christmas," Kevin says.
Over the next 26 months, Mason was hospitalized several times. "After thousands of pills; hundreds of port accesses, clinic visits and IVs; 30 spinal taps and too many 1 a.m. emergency room visits to count, we are proud to say Mason is now cancer free," says a relieved Danie.
"CMN Hospitals has been there, offering us help. We might turn it down when Mason was doing great, but other times we accepted their generosity during longer hospitals stays to ensure we could spend every day with him," explains Kevin.
They received meal vouchers during Mason's hospital stays and daylong clinic appointments. Gas vouchers helped with their frequent trips to Gundersen from their home in Trempealeau,—a 45-mile round trip.
"Recently, CMN Hospitals helped Mason get an iPad for his speech and learning development," explains Danie. "The iPad helps him visually learn and hear the different sounds of words and letters. Playing learning games has helped him learn his colors, letters and how to write his name."
Danie says, "It takes a village to raise a child and having CMN Hospitals be part of our village has been a lifesaver. That's why we want to pay it forward and help other families."
Hometown: Winona, Minn.
Diagnosis: Type 1 Diabetes
It was Halloween 2013 and 9-year-old Willa Krase of Winona, Minn., was looking forward to trick-or-treating as a mummy. But the day, as it turned out, held something far scarier for Willa and her family.
"For weeks Willa had been cranky, exhausted and extremely hungry and thirsty. We thought she was having a growth spurt and early teenager attitude," recall her parents, Jill and Ethan Krase. "Eventually we knew something was wrong and took Willa to our pediatrician."
Jill continues, "The doctor said she would call the next day with test results, but 10 minutes after leaving, our phone rang. The doctor said to come right back."
The news they got changed everything. With blood sugar levels more than twice the normal level, Willa was diagnosed with Type 1 diabetes. They were sent directly to Gundersen Health System in La Crosse, where Willa remained hospitalized for four days.
"Willa thought that after the first insulin shot she was cured. She didn't understand at first that she'd need insulin for the rest of her life," recount her parents. "But after she got out of the hospital, Willa insisted on telling her class at school what was going on and everything she knew about diabetes. It was very brave of her."
They eventually adjusted to the demands of a disease that requires much attention. Willa, now 12 years old, manages her diabetes, needing little help from her parents.
For three years, Children's Miracle Network Hospitals has provided support for Willa to attend diabetes camp. "It's the only sleep-away camp Willa could safely attend and there she learns new self-care skills. At camp she can do all the things other kids do without being too distracted by diabetes," Jill explains. "Without help from CMN Hospitals, we'd have to cut corners to pay all the fees ourselves."
The Krases say, "Having children with serious chronic diseases is stressful, especially when the diseases need to be managed every day with no breaks…ever. Having CMN Hospitals reach out with help is very comforting and uplifting."
Hometown: Caledonia, Minn.
Diagnosis: Crohn's Disease, Hereditary Spherocytosis
For much of her young life, Iris Abbott has been suffering from Crohn's disease, an inflammatory disease of her digestive tract. Iris was also born with hereditary spherocytosis (HS), a blood disorder that causes low hemoglobin, anemia, jaundice and an enlarged spleen. These complicated illnesses led to severe chronic symptoms affecting many functions of Iris's body.
Iris spent many years on different medications, following a strict diet, and taking supplements to manage the symptoms. However, it was during her early teenage years when "life became very interesting," recall Iris's parents, Celeste and Russell.
"Iris could not gain weight, was not approaching puberty, and could not stay hydrated. Between January 2014 and May 2015 Iris was hospitalized ten times, mainly due to dehydration and electrolyte imbalances," they add.
With both conditions inflicting havoc on Iris's body, in 2015 they made a bold decision. Iris's colon was removed and a feeding tube put in to her stomach so she can get the nutrients her body desperately needed. While a drastic move, her mother reports, Iris now has gained weight and grown more than three inches.
During her many hospital stays, Children's Miracle Network Hospitals helped Iris's family with gas cards for their frequent trips to Gundersen from their Caledonia, Minn., home. They also received meal vouchers. "It is stressful to be away from home and with a child in the hospital. Having CMN Hospitals staff listen, encourage and help is priceless," says Celeste.
"The best thing is Iris is now able to participate in numerous activities which where impossible before because she was too sick. She has not missed any events due to illness or hospitalization since the surgery," Celeste says.
Hometown: La Crescent, Minn.
Diagnosis: Spinal Muscular Atrophy
Nine-year old, Addison Tarrence was born a healthy baby girl, hitting all of her early milestones – rolling over, sitting up, standing and walking. It wasn't until she was 18 months old that her parents, Kara and Josh, started noticing some unusual things.
"She began randomly falling to the ground," recalls Kara, "there was no warning of when her legs were going to give out."
Just a few months before her third birthday, blood tests confirmed that Addison had spinal muscular atrophy (SMA), a genetic disease that causes muscle wasting among other health issues.
"The good news was that Addison has type III," her parents explain. "Most diagnosed with type III live a normal life span. Their disease does progress, just usually at a much slower pace."
Addison was 8 years old when she became fully dependent on her wheelchair. Now a 4th grader, she is active in adaptive recreation activities including swimming, downhill skiing, water skiing and her favorite—horse therapy.
"CMN Hospitals has helped cover part of the cost of her horse therapy for the past three years. Without their help, she might not be able to participate due to the cost," says Kara. "Horse therapy is very good for her body and keeps her as active as possible."
Kara adds, "This is not the life we had planned. Some days are very hard and the thought of what the future holds weighs very heavy on our hearts. But then there are days better than I could have ever imagined. Addison is a fighter in her own quiet, quirky way. We are not giving her hope, she is giving it to us."
Kody Pretasky was born prematurely weighing 3 lbs. 3 oz. In just under three weeks, he went home from the Neonatal Intensive Care Unit without any feeding or breathing tubes. That was enough to convince his parents, Kristin and Mark, that Kody was their little trooper and always would be.
At age 2½, Kody was presented with another challenge that would require attention the rest of his life—type 1 diabetes.
Kristin and Mark quickly learned how to monitor their son's blood sugar levels and administer insulin. "Giving Kody shots at such a young age was so difficult and getting him to eat at specific mealtimes was a constant chore," says Kristin.
Fortunately, the Pretaskys found all the support they needed from their family, the Pediatric Diabetes and Endocrinology team at Gundersen and Children's Miracle Network Hospitals® (CMN Hospitals).
"Children's Miracle Network Hospitals gave us meal vouchers when Kody was in the NICU, and helped cover the cost of diabetic supplies and expenses," says Kristin.
When Kody was 3½ years old, CMN Hospitals helped fund an essential piece of equipment, an insulin pump. "Our day-to-day routine used to revolve around insulin shots and mealtimes. Now, Kody can eat when he wants to and do normal things like other kids. The insulin pump has been a lifesaver! We are so grateful to CMN Hospitals for their constant support."
Kody, who will be a 6th grader, never lets diabetes stand in his way. His all-time favorite hobby is reading and he aspires to be an architect someday. His parents know their "little" trooper (now 5 feet 2 inches) has a bright future ahead.
Logan Kelm is more than meets the eye.
The Holmen, Wis., boy loves making friends, playing with siblings and is known to savor a slice or two of sausage pizza. He's just 6 years old now, but when he grows up, he wants to be a Transformer. Perhaps the fictional shape-changing mechanical beings of Hollywood blockbuster fame serve as an inspiration for this compassionate boy.
Early in his young life, Logan was diagnosed with merosin-deficient congenital muscular dystrophy, detected not long after he was born. Logan has already experienced some tough times and can expect challenges ahead. He's at risk for heart issues, respiratory illnesses, scoliosis, joint contractures—that will no doubt impact him and his family.
Children's Miracle Network Hospitals® has already helped Logan's family. "CMN Hospitals provides help to those that need it most," says his mom, Andrea.
The compassionate specialty care Logan receives at Gundersen Health System through the Neuromuscular Clinic provides family-centered treatment and the services he needs close to home.
With the help of CMN Hospitals, Logan has a wheelchair-lift for the family van and a wheelchair ramp for his home. CMN Hospitals has helped with others transportation costs as well.
"Most people don't realize how expensive and difficult it is to get equipment for children who have special needs. CMN Hospitals makes the process so much more bearable," says his mom.
With CMN Hospitals and Gundersen on his side, Logan could very well be a Transformer star some day!
At just two years old, Tannek Gilbertson is loaded with personality. This outgoing toddler "dances like crazy," his mother, Felicity Baldwin, reports. "It's his favorite thing to do. Anytime music is on, he has to dance."
Tannek also likes to sing, color, play, paint and take car rides, but when he knows he's in trouble he likely to make a run for it. He's a relatively normal kid in most ways…but one.
Tannek was born with his intestines outside his body. Surgery, days after his birth, successfully placed his intestines inside, but it took a long time for him to learn to eat. His parents had to deal with vomiting and intestinal blockages requiring surgery.
Tannek's mother, Felicity, and father, Scott Gilbertson, had their hands full with four young children—three with special health issues. "Children's Miracle Network Hospitals is always there when you need them," remarks Felicity. "It's a great organization."
While Tannek was in the hospital, and later traveling to doctors' appointments, CMN Hospital provided the family with meal vouchers and gas cards. Because he has difficulty easily digesting food, Tannek needed special formula which CMN Hospitals helped the family purchase.
Digestive problems are a way of life for Tannek, but like most growing boys, Tannek still loves to eat. More importantly, he's thriving and happy. Felicity says, "His giggle will make your day."
Music has the power to express delight and incite happy feet. It animates 3-year-old Eloya Gilbertson who loves to sing and dance. Her infectious joy bubbles over in her play, artwork and fits of giggles, too. The little girl with the lyrical name is almost always smiling.
To look at her, it's hard to imagine the challenges she and her family faced when Eloya was born with her intestines and part of her stomach outside her body. She was so small that surgery to repair the defect proved difficult, resulting in a very long recovery.
Long days in the Neonatal Intensive Care Unit took a toll on Eloya's parents, Felicity Baldwin and Scott Gilbertson who, at the time, also had two other young children at home. Children's Miracle Network Hospitals was there to help.
"They helped with meal vouchers for us while Eloya was in the hospital and money for gas to get to and from the hospital," Felicity says. Even after Eloya went home CMN Hospitals reached out to help when Eloya needed special formula and providing gas cards for the many trips to doctors' appointments.
"CMN Hospitals is always there when you need them. It gives parents hope when they need it most," she adds.
Recently diagnosed with epilepsy, Eloya is facing new challenges. Despite that, her parents reports that Eloya is doing great. She loves learning new things and is eager to start school soon.
The support that Children's Miracle Network (CMN) Hospitals gives is as unique as the children and families they help. Case in point: six-year-old Mya Berkowitch from Chippewa Falls, Wis.
Mya has Down syndrome and related health issues such as cognitive, physical and speech delays; vision problems; and a digestive disorder. She was also recently diagnosed with autism spectrum disorder. All this translates to frequent appointments with specialist in La Crosse. Traveling from their home in Chippewa Falls, Wis., this is a round trip of about 200 miles.
"Traveling to see specialists can get very expensive," says Mya's mother, Jenel, knowingly. "CMN Hospitals help with gas and meal vouchers which we are personally grateful for."
But then when Mya needed her first pair of special eyeglasses, which were not covered by insurance, CMN Hospitals was there to help, too. They also got Mya an iPad, an important tool to help her with communication and learning.
Jenel explains, "Children with special needs require special equipment that can be expensive. CMN Hospitals help families who may not have the means to purchase the equipment.”
Now in kindergarten, Mya loves school and is showing remarkable improvement. Some of her other favorites include Sesame Street, her Abby Cadabby doll and stuffed puppy, playing with her sister Madelyn, and rare indulgences of pizza and cookies.
"We don't know what the future holds for Mya," says Jenel. "But she's amazing."