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.
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."