Children's Miracle Network Videos:
CMN Miracle Kids:
Meet Brooks
Age: 3
Hometown: Sioux Falls, S.D.
Diagnosis: Cystic Fibrosis
Brook's Story
During Angela’s pregnancy, doctors found an echogenic and dilated bowl on the 20-week ultrasound. One possible cause of this was Cystic Fibrosis; however, the chances were very small. Angela had genetic testing done and found that she was a carrier of the Cystic Fibrosis gene. Scott was then tested and they found that he was also a carrier of the same gene mutation. This meant that their baby had a 1 in 4 chance of having Cystic Fibrosis. This came as a shock to Scott and Angela because neither of their two older children had Cystic Fibrosis.
Brooks was born in October of 2016, at 38 weeks. He spent 9 days in the NICU and at 7 days old, they received the news that his newborn screen came back positive for Cystic Fibrosis. This was later confirmed by a sweat test.
Brooks is enzyme deficient, so he has been taking enzymes since about a week of age. Without these enzymes, he would not be able to absorb his food. In addition to enzymes, Brooks also started on airway clearance techniques at about 3 weeks of age to help keep his lungs clear.
Brooks is now 3 years old. He is a typical crazy busy toddler who loves to play with his older brothers and puppies.
Meet Natalie & Chris
Ages: 4 & 7
Hometown: Canton, S.D.
Diagnosis: KBG Syndrome & VSD Heart Defect
Natalie & Chris's Story
Chris was born with a hole between the ventricles of his heart. He underwent open heart surgery before his first birthday and had an artificial pacemaker placed when he was 3 years old. He'll need a pacemaker, what he calls the “battery for his heart,” the rest of his life. Once Chris was on the road to health, Brianna and Thomas thought their days of sitting in a hospital waiting room were over. Then Natalie was born.
Natalie became one of fewer than 200 people in the world to be diagnosed with KBG syndrome. The disease affects every cell of her body, causing seizures and a wealth of other health concerns including a weakened immune system. She gets sick easier than other kids, and over the past year, has been admitted into Sanford Children's countless times.
Summer of 2017, the family had one of their scariest moments yet. Brianna remembers that one minute, Natalie was happily playing, and the next she was unresponsive, suffering from a severe infection. "Holding her in my arms, I truly felt like she was dying," Brianna said. "The horror of that feeling will never leave me."
Thankfully, expert care from the doctors and nurses at Sanford Children's saved Natalie's life, and she recovered. The family still find themselves traveling to Sanford Children's at least once a week. Natalie now has a port to make drawing blood and administering medication easier in the case of another medical emergency.
But none of that keeps Natalie from loving everyone she meets. Even when she's sick, she doesn't want to stay in her room. She wants to hang out at the nurses’ station and play with any doctor, and his or her stethoscope, she can find. Her big brother, Chis, also exceeds expectations. He’s a happy, energetic little boy who amazes Brianna with his bravery. He walks into each doctor's appointment without fear and sits so still when the nurses tell him to.
Meet Saige
Age: 3
Hometown: Dell Rapids, S.D.
Diagnosis: Esophageal Atresia
Saige's Story
Brodie and Brianna were ecstatic to to find out they were pregnant, and even more excited to find out they would be having twin girls! However, throughout the entire pregnancy, Brodie and Brianna were told to expect the worst at every appointment. The girls were born 5 weeks early in March of 2016, weighing 6.1lbs and 5.5lbs (Saige being the smaller of the two). After the girls were delivered, they were both brought to the NICU, where they would come to find that Saige was born with two life threatening birth defects. A condition called esophageal atresia (occurs when the upper part of the esophagus does not connect with the lower esophagus and stomach) and tracheoesophageal fistula (an abnormal connection between the upper part of the esophagus and the trachea or windpipe.)
After multiple surgeries, surgeons were able to connect Saige’s stomach to the esophagus and close the fistula between the esophagus and windpipe. After many emergency room visits in 2016 and 2017, doctors were able to re-implant both of Saige’s ureters, and close her bladder. Since then she has not had any issues and even graduated from seeing her specialty doctor, by only going as needed or see him in a year.
Saige is a fighter and she continues to fight, her battles are not over but her family takes everything day-by-day and are thankful for every minute they get to spend together.
Remember Tysen
Angel Wings Earned at age 19
Hometown: Watertown, S.D.
Diagnosis: Friedreich’s Ataxia
Tysen's Story
Watching her 5-year-old son, Tysen, play soccer and t-ball with his friends, Nicole suspected something wasn’t right. “I noticed he was a lot clumsier than the other kids and would run out of breath easily,” Nicole said.
She began seeking answers, consulting different specialists and praying that whatever was affecting her son could easily be treated. Her worst fears were confirmed with the diagnosis of Friedreich’s ataxia, a rare degenerative disorder that causes damage to the nervous system, resulting in muscle weakness, speech difficulties and heart problems.
Since his diagnosis at age 5, Tysen underwent open heart reconstruction, multiple bladder surgeries and a full spinal fusion. Fortunately, the disease never touched Tysen’s mind, much less his unstoppable spirit. He truly influenced and inspired everyone he met.
Tysen lost most of his physical abilities and depended on others for nearly all his daily needs, from dressing and washing to transferring from his bed to a motorized chair.
Tysen started having a multitude issues as a result of his diagnoses and started seeing palliative care in February 2018. Though he was still the same sarcastic Tysen everyone knew and loved, his disease started causing him pain and uncertainty. After a surgery in March, Tysen developed pneumonia, causing complications and was put on hospice. After a hard fight and with his family by his side, Tysen earned his angel wings on March 10, 2018.
Meet Avery
Age: 5
Hometown: Hartford, S.D.
Diagnosis: Spastic Quadriplegic Cerebral Palsy
Avery's Story
Avery was born 11 weeks premature and was diagnosed with two Grade 2 brain bleeds. Initially the doctors told Jared and Mindy what that could mean for their brand new daughter, Avery, but she was not officially diagnosed with Cerebral Palsy until shortly after she turned 1 on December 9, 2015. Just recently on a routine pelvic X-ray, the doctors found that her hips are not forming correctly, which is not uncommon for kids with spastic Cerebral Palsy, and could mean other diagnoses for Avery.
Avery has been doing physical therapy and occupational therapy since she came home from the Boekelheide Neonatal Intensive Care Unit. She walks with a walker and if she is walking longer distances, uses a wheelchair. Avery loves hippotherapy and all things horses. She also loves swimming with Adaptive Aquatics!
Jared & Mindy are grateful for the meals that Children’s Miracle Network funds provided, as well as the state-of-the-art giraffe bed that Avery was in while in the Boekelheide NICU.
Meet Cole & Remember Caleb
Age: 13 Cole
Caleb earned Angel Wings at age 8
Hometown:Brookings, S.D.
Diagnosis: Reversed Organs & Congenital Heart Defect
Cole & Caleb's Story
Twins, Caleb and Cole, may have looked like normal twins on the outside, but the inside was quite the opposite. They were born with reversed organs, which means all of their organs were on opposite sides inside their bodies. Caleb was also born with a rare congenital heart defect that would require medical procedures and monitoring the rest of his life.
Because of this heart defect, he had 3 open heart surgeries by the age of 4. When Caleb was first born, he had his first heart surgery and was scheduled for a second surgery when his right artery started closing. He was then rushed to emergency surgery where he was opened up three different times in one day.
On August 27, 2014, after a long fight, Caleb earned his angel wings at 8 years old.
Meet Collins
Age: 5
Hometown: Vermillion, S.D.
Diagnosis: Cystic Fibrosi
Collins' Story
Collins was diagnosed with cystic fibrosis at just 12 days old. Since that day, the family has been creating their own “normal.” While that includes trips to the park and seeing the animals at the zoo, it also means Collins has to take medicine before she eats anything.
She is also strapped into a high-frequency chest wall oscillation vest every morning and every night. The vest helps break up mucus in her lungs and keeps her from choking on the fluid.
Even though her parents know the treatment is good for her, it’s still hard to watch their little girl go through it.
“It breaks your heart every time,” Collins’ father, Chris, said. “Even as somebody who knows this is good for her. You want to trade places with her. You wish it was you.”
“Removing the mucus from the airway keeps the patient’s lungs healthy longer,” said Collins' physician, Sanford pediatric pulmonologist Chuanpit Moser, M.D.
Through Collins' journey with cystic fibrosis, the family has been thankful to have expert care available close to home at Sanford Children’s Hospital in Sioux Falls.
“I feel like we have had so much support and just knowing that the programs are so close to home,” Collins' mom, Katie, said. “We know that if something serious were to happen, such as being in the hospital for a long period of time, we would have support from Sanford Children's when we need it.”
With that comfort and security, the family knows they’re going to be just fine with their tough little girl. “She’s the bravest, strongest person I know, and will continue to be that way,” Chris said.
Meet Klara
Age: 4
Hometown: Brandon, S.D.
Diagnosis: Premature Birth
Klara's Story
When Jenn was 20 weeks pregnant with Klara, doctors discovered she wasn’t growing at the rate she should be. At their 24 week ultrasound, it was determined she had severe IUGE (intrauterine growth restriction) and she was growing 3 weeks behind. Derek and Jenn were prepared for the worst at that visit as chances of Klara surviving were slim. Jenn was placed on bedrest at 25 weeks. The night before Jenn was 26 weeks, she became critically ill with sudden severe HELLP syndrome and required an emergency C-section the following morning. Klara Elizabeth was born January of 2015 weighing 1 pound 0.3oz and was 11 inches long.
Klara spent the next 151 days in the NICU at Sanford, receiving life-saving care. She had a breathing tube for the first 8 weeks of her life, and Jenn didn’t get to hold her until day 34, Derek held her first at day 54. She had many struggles including ROP eye ablation surgery with Dr. Tufty and a G-Tube/Nissen/Hernia repair with Dr. Rykman. Klara went home with oxygen, monitors, feeding tube feedings, medications, and many, many therapies and appointments. Although she continues with some medical issues and gross/fine motor delays, Klara is now a healthy, happy 4 year old – scoring well above the average in cognitive & social functions. Klara’s parents truly believe that Klara is alive and thriving because of the care, expertise, facilities and technology available at Sanford, due in large part to the partnership and support from CMN.
Meet Lily
Age: 7
Hometown: Aberdeen, S.D.
Diagnosis: Rocky Mountain Spotted Fever
Lily's Story
Lilly and her family went camping in June of 2019 and Lilly’s parents really didn’t think much of it when Lilly got a fever and didn’t feel well about a week after their trip.
After several visits to the hospital, Lilly continued to get more and more lethargic, a rash spread to her whole body, she stopped eating and slept many hours of the day.
She was diagnosed with Rocky Mountain Spotted Fever in Aberdeen and admitted to the Castle of Care for treatment.
Remember Katelyn
Angel Wings Earned at age 14
Hometown: Sioux Falls, SD
Diagnosis: Heart Defects & Plastic Bronchitis
Katelyn's Story
Katelyn's entrance into the world was far from easy. After receiving a devastating heart defect diagnosis at 2 days old, she endured four open-heart surgeries and nine additional surgeries - all by age 11.
Following her final open-heart surgery, Katelyn was diagnosed with an incredibly rare condition called plastic bronchitis, where the air space in her lungs had filled with a rubber-consistency matter. Physicians prepared Katelyn's family for the likelihood she would not survive the overwhelming condition, leaving them to pray for a miracle. And that's exactly what they got. Katelyn lived, and her case is now being written for submission in future medical journals.
In July 2015, Katelyn received surgery to close off a lymph node that was causing her plastic bronchitis, and she was cured! On March 16, 2017, Katelyn was having some slight breathing difficulties after having a fever for a few days. She earned her angel wings on her way to the hospital holding her mom’s hand.
Meet Autumn
Age: 5
Hometown: Sioux Falls, SD
Diagnosis: Severe Epilepsy/Unknown
Autumn's Story
Autumn was born a healthy, beautiful little girl. For the first four months, everything was perfect. Soon after, she had her first seizure. They were not prepared for what would happen next. Episode after episode of unexpected seizures. Autumn was slowly making strides as a young toddler, even with having up to 100 seizures a day. However, at just two years old, Autumn had her first stroke. It was at that point that the family's life was changed even more drastically. Everything they had been working with her on was gone. Her ability to speak, crawl, pull herself up, etc. At one point, Brandon and Evangeline were told to prepare for the possibility to make the decision to take their daughter off life support. She proved she was a fighter and was able to go home from the hospital. She still has daily, unexplained seizures, sometimes up to 100 a day. At this point, Autumn is 5 years old and acts as a 6-12 month old mentally.
The family feels they are seeing a bit of a bright horizon these past few months. They recently just started their care at Sanford, after ending up in Sanford ER in May 2018. Since that time, they transferred all their care to Sanford Children’s Hospital and most recently, had conversations with Dr. Pearce, the Executive Vice President of Innovation and Research at Sanford Health. He has taken their case on to better understand what is causing the seizures as a part of his rare disease group. They feel this and Sanford Health has been an answer to prayer. Autumn has changed her parent’s perspective on life. Even after all she has been through, her positivity is contagious and she makes a positive impact on anyone she meets.
Meet Lawson
Age: 3
Hometown: Aberdeen, SD
Diagnosis: Down Syndrome, AVSD (heart defect), TMD (form of Luekemia)
Lawson's Story
Jessica and Keith went in for their 20-week ultrasound for their second child not expecting anything out of the ordinary. While they were in the ultrasound, the technician paused and left the room and came back and let them know they would be notified if they had any concerns.
About a week and half later, Jessica received a phone call that would change her life forever. The OBGYN told her that they think the baby might have a hole in its heart. As if that wasn’t big enough news to hear, there was more to come.
Brooks was born in October of 2016, at 38 weeks. He spent 9 days in the NICU and at 7 days old, they received the news that his newborn screen came back positive for Cystic Fibrosis. This was later confirmed by a sweat test.
Brooks is enzyme deficient, so he has been taking enzymes since about a week of age. Without these enzymes, he would not be able to absorb his food. In addition to enzymes, Brooks also started on airway clearance techniques at about 3 weeks of age to help keep his lungs clear.
Brooks is now 3 years old. He is a typical crazy busy toddler who loves to play with his older brothers and puppies.
Meet Tucker
Age: 3
Hometown: Aberdeen, SD
Diagnosis: Down Syndrome, AVSD (heart defect), TMD (form of Luekemia)
Tucker's Story
Tucker’s story started in February of 2018. His parents, Kelsie and Ryan, noticed their little boy had a fat lip. They soon learned it was more than a toddler’s bump or bruise. Tucker had a rare cancer in the soft tissue of his mouth called rhabdomyosarcoma. “We realized everything had changed, and we had no idea what was about to happen,” Kelsie said.
Radiation was the biggest battle. Tucker developed mouth sores so painful he refused to eat or drink. He couldn’t even suck on his pacifier for comfort.
Through all the helpless and frightening moments, the Castle has been a welcoming and comforting place for Tucker and his whole family. “It’s become like a second home for our family,” Kelsie said.
Tucker can laugh and play while his doctors and nurses give him a future without cancer. Everyone from the security guard to the Child Life Specialists makes each of the family’s visits feel like a homecoming.
In August of 2019, Tucker took his last of 42 chemotherapy treatments and was able to ring the bell signifying the end of his treatment!