Remi is a thriving one-year-old who Katelyn and Casey cannot imagine life without and, if not for an ultrasound, she may not be here.

Katelyn, an OB/GYN ultrasonographer for Mayo Clinic in Eau Claire, sat silent in stunned disbelief as she stared at the screen during her 20-week ultrasound.

“I wanted to check on her; I wanted to see her,” said Katelyn, Remi’s mom.

“But as I looked at her heart…my heart sunk.”

Something was wrong. Katelyn’s friend and colleague confirmed her greatest fear: her baby had a heart abnormality.

“You never expect anything to be wrong with your baby…” said Katelyn.

Remi was diagnosed with Dextro-Transposition of the great arteries. DTGA is a congenital heart defect in which the main arteries—pulmonary and aorta—exit the heart parallel as opposed to crossing. It is a rare condition—affecting one in every 3,413 babies—and it is not always immediately detected.

Which makes the discovery even more remarkable.

“If the heart defect on the ultrasound was not detected and Remi was born in Eau Claire, she would have been flown to Rochester and she may not have survived,” said Katelyn. “Her condition post-delivery was very bad.”

Katelyn relocated to Rochester when she was 37 weeks pregnant because the pediatric cardiac team was not comfortable with her being two hours away…in case Katelyn went into labor. And Remi would need immediate care.

When Katelyn arrived in Rochester, she was not familiar with the Ronald McDonald House. After Remi was diagnosed, Katelyn was referred to the House by a Mayo Clinic social worker. The House answered two key questions: how would Katelyn and Casey afford lodging and how would they maintain normalcy for their four-year-old daughter Reese?

“Reese understood she was going to be a big sister, but she didn’t understand what was happening,” said Katelyn. “My husband is a teacher and wasn’t able to take time off before Remi was born. So, I started maternity leave early and Casey stayed home with Reese.

“And every weekend they would come to Rochester and we would stay at the Ronald McDonald House…as a family.”

But the House was in the final stages of its expansion and rooms; Katelyn was placed on the waiting list. Her OB/GYN doctor in Eau Claire, whom she works with, rallied others to contribute money for Katelyn’s hotel stay until a room opened up at the House. And they made a generous donation to the House in Remi’s name.

“It was such a blessing,” Katelyn said. “And when I was induced in Rochester, Dr. Yun from Eau Claire visited me and encouraged me. It was really sweet.”

Remi June was born on May 20. She was immediately transported via ambulance from Methodist to Saint Marys—Remi needed a balloon septostomy to stabilize her heart for a few days until she was strong enough to undergo surgery. Katelyn remained at Methodist for her own recovery while Remi recovered in the NICU at Saint Marys.

Doctors conducted a major open-heart surgery—arterial switch operation—in May 2019.

“The doctor is world-renowned,” said Katelyn. “Our beautiful daughter grew stronger and stronger by the day. She simply needed time to recover.

“And we were with her because of the Ronald McDonald House.”

When Katelyn arrived in Rochester, the House was in the midst of its expansion to add more guest rooms and community spaces. Her family was staying at the House for the grand opening in May and was the first family to stay in one of the new guest rooms—two moments she says they will never forget.

“I don’t feel like we deserved to be at the House,” Katelyn said. “It’s very humbling. It was an incredible support system, not only monetarily, but in every way.

“We did not have to worry about anything—we were able to focus on our child.”

One reason they were able to focus on Remi was because of the House volunteers.

“All of the volunteers were incredible,” said Katelyn. “They always had a smile on their face and asked if we needed any help. They were there for us during the hardest and most difficult time of our life.

“Again…it’s very humbling.”

Remi has fully recovered and is living a normal life—there is nothing anatomically wrong. She can do anything any other child can do—no restrictions. She will visit a cardiologist yearly for the rest of her life, but all reports are positive thus far.

While Remi never stayed at the House, it became much more than a place to stay for her parents and sister.

“The Ronald McDonald House is the best place in the entire world,” Katelyn said. “I can’t explain it in words…it means so much to our family. It’s a significant part of our lives.”

“It’s a place we will never forget and a place we will forever support.”

More than five years ago, Chase’s wife, Jenny, was airlifted to Mayo Clinic’s Methodist Hospital in Rochester—she was in premature labor. Ready or not…their son was on his way. And he was seven weeks early.

Braylon was born, but there were complications. He wasn’t making a sound and something was noticeably wrong with his skin. Braylon was rushed to the Neonatal Intensive Care Unit (NICU) at Mayo Clinic’s Saint Marys campus.

He was fighting for his life.

In the first few days, Braylon was resuscitated numerous times—his organs were not functioning properly—but he was a fighter and he pulled through.

It was only the beginning.

Braylon was diagnosed with Ichthyosis, a rare skin disorder that affects only 1 in every 600,000 babies annually. Chase and Jenny were told their son would likely be deaf and blind. And he had a more severe case of the disorder, causing additional health concerns.

Doctors recommended Braylon spend several weeks in the NICU for monitoring.

Chase and Jenny were told to call the Ronald McDonald House of Rochester and see if a room was available. There wasn’t; the family was put on the waiting list. But within only a few days, Chase and Jenny moved into the House, which is within walking distance of Saint Marys.

“The Ronald McDonald House of Rochester makes it possible for families to stay close during the most difficult time of their lives,” Jenny said. “We could not have done it without the House and our family, friends, and community.”

Three weeks later, Braylon and his parents were able to move home.

Only weeks after being released from the NICU, Braylon and his parents returned to Rochester and Mayo Clinic for a follow-up appointment. The result was miraculous. His left ear was functioning fully and his right ear was improving as well.

It was yet another testament to the family’s motto: Don’t Stop Believin’.

Braylon’s battle is not over. His health concerns still linger. But he has his hearing and vision. And Chase, Jenny, and Braylon continue to take it one day at a time—a rule Chase affectionately calls: winning the day.

“You never know what tomorrow brings, so enjoy today,” said Chase.

The Rayman family continues to support the Ronald McDonald House of Rochester by collecting and donating pop tabs.

Additionally, Chase is one of the people involved with Cans for Kids, a can collection event hosted by McNeilus Companies. McNeilus Companies parks one of its trucks in the House parking lot to accept donated aluminum cans—all proceeds directly support the children and families at the House.

“Pull a tab, save a can,” Chase said. “It is easy and it can help a family in need.”

The next collection date for Cans for Kids is Saturday, March 14, from 8 a.m. – 12 p.m. For more information, please visit https://www.rmhmn.org/cansforkids/.

Megan and Jon were told it would be at least six to 12 weeks before they would be able to take their daughter home from the hospital. But Elena had other ideas.

“Elena is doing very well,” said Megan. “Nurses said she was trying to set records.”

“We know families who have been here for six months,” Jon said.

“We are very fortunate,” said Megan.

At their 20-week ultrasound, Jon and Megan found out that their daughter was missing part of her diaphragm. The ultrasound also revealed Elena’s stomach was pushed up into her chest cavity, shifting her heart to the right. When the doctor came in to discuss the ultrasound results, she told them that their baby has a serious birth defect known as congenital diaphragmatic hernia. This is a condition in which part or all of the diaphragm does not form. In Elena’s case, there was a large hole allowing abdominal organs to migrate into the chest cavity, which in turn inhibits lung growth and development.

“It was very scary,” Megan said. “It felt like a death sentence. When we learned how severe it was and read about survival rates…we were very deflated.”

Jon and Megan made a thoughtful, but difficult decision to pursue fetoscopic endoluminal tracheal occlusion (FETO)—a procedure in which a balloon is inserted into the trachea of the fetus and inflated to block the trachea. The procedure forces fluid into the lungs of the fetus helping them to grow and mature. This procedure is still rather investigational and has significant risks: uterine rupture, fetal death, infection, operative complications, early labor, and potential failure. The balloon is to be left in place for several weeks and candidates must stay within minutes of Mayo Clinic during this time period to be closely monitored and in the event of an emergency. There was also no guarantee that they would be candidates for the procedure.

Many tests later—including many ultrasounds, MRI, an amniocentesis, echocardiogram, among others—Jon and Megan were informed their baby was a candidate for the procedure.

FETO is performed in very few locations across the United States, as hospitals and clinics need FDA approval, and it is only performed in the most severe cases of CDH. The deciding factor for Megan and Jon: Mayo Clinic has a doctor who has been performing the procedure for decades across the world and has experienced great success.

The procedure would once again prove successful.

Elena was born without much complication, but she required immediate intubation and respiratory support in the two days leading up to her hernia repair surgery. She had a very severe hernia that they assumed would require a patch to close. Doctors also indicated that her diaphragm would never function as a diaphragm, but that the patch would be used to keep her abdominal organs from coming up into her chest cavity once again. They wouldn’t know the extent until they made the incision.

“I was very nervous,” Megan said. “They were going to cut open my little baby. Surgery is always a risk. There was a very real possibility that I would never see my baby again.

“It was pretty traumatic.”

But the surgeon was pleasantly surprised. They were able to move Elena’s organs into their correct places and were able to use her diaphragm tissue to close the hernia.

“It was amazing,” Jon said. “Simply amazing.”

The surgeon said Elena did very well, but warned that things may get worse before they get better. But Elena didn’t waiver and continually amazed doctors and defied the odds. There is a chance it will herniate again and she may need another surgery. But recovery is going very well.

Elena does not have any heart abnormalities. Initially she was diagnosed with pulmonary hypertension, but that has since subsided.

Every congenital diaphragmatic hernia case is variable and doctors need to be ready for a variety or potential problems but little intervention was needed as Elena exceeded expectations.

Doctors told Jon and Megan that Elena would have been in a very different state without this procedure.

“We are so lucky,” said Megan. “The doctors and nurses are incredible—they have become our family. We are very confident in the care Elena has received.

“We are so fortunate to live near a world-class facility like Mayo.”

After arriving in Rochester for the procedure, Mayo Clinic social workers recommended Megan and Jon call the Ronald McDonald House. They knew about the House, but they did not know if they would be able to stay because their child was not yet born. They learned that parents receiving care at Mayo for fetal surgery and high risk pregnancy are able to stay at the House.

The family was 43rd on the waiting list and waited 12 days for a room—an issue the House hopes is reduced with its expansion. Because Megan and Jon did not have enough money for an extended stay in a hotel, the family contemplated staying in a small camper until there was a room at the House, which would not have been the most comfortable living arrangement at 30 weeks pregnant.

“More rooms and less of a wait time is huge,” Megan said. “I honestly don’t know what we would have done without the House.”

And with their two-year-old son Robbie roaming the halls, the House truly became a home away from home and a refuge after long days and weeks. Extended family members visited and looked after their son while Jon and Megan were with their daughter in the hospital and the House activities made it easy to spend time together as a family.

“Robbie loves the House,” said Megan. “He has made so many friends.”

“I couldn’t imagine being cooped up in a hotel room for all this time,” Jon said.

The support from other guest families is what meant the most to Megan. They felt very fortunate to be able to bond with other families in similar situations as theirs.

In addition to the other children and families, the House is made a home by the hundreds of volunteers who donate their time.

“You come in and the volunteers know you by name and they know your story,” said Megan. “They want to be here. They truly love what they’re doing.”

And the House is fresh off of its capital campaign, which raised more than $17 million and received more than 1,600 unique gifts to add more guest rooms and community spaces.

“So many people who donate to the House or volunteer here will never even use this facility,” Jon said. “It’s incredible…”

Elena did end up setting records, as she went home with her parents after only four weeks, which was several weeks ahead of the original timeline.

“I don’t know if we would have felt like this journey was possible without the Ronald McDonald House,” said Megan. “We would have tried, but it would have been so much harder.”

“We wouldn’t have been able to have the life-saving procedure for our baby without the House,” Jon said.

“It’s more than we could have ever imagined,” Megan said.

“And now it feels like…I can’t even put it into words…it feels like our home,” said Jon.

As Mandy looked at her son, Preston, she said, “P is just special…all the way around.”

“Preston came into the world 10 days early—with the biggest brown eyes—and stole everyone’s heart,” Mandy said. “He’s the sweetest little boy, but tough and fiercely independent. He does things to the music of his own anthem.”

As three-year-old Preston grew up, Mandy and his dad, Andrew, knew something was wrong. Preston was having odd medical issues—extreme thirst and urination were the primary symptoms. The pediatrician tested him for diabetes, but his blood panels didn’t support the diagnosis. His eye started to drift, so he visited a pediatric ophthalmologist.

No answers.

“He looked normal, he acted normal and all of the testing was normal,” Mandy said. “It didn’t add up.”

Their new pediatrician directed them to an endocrinologist—a physician who specializes in disorders of the endocrine system, such as diabetes. The endocrine immediately knew something was wrong and linked the issues, diagnosing Preston with diabetes insipidus, which deals with the pituitary gland. But there were only a few reasons for a three-year-old to contract these conditions…and one was a brain tumor.

The endocrine ordered a MRI and a water deprivation test—water is withheld from the patient and their blood is checked—for the next day. Less than 30 minutes into the four-hour test, they discovered the brain tumor. Less than one hour later, Mandy and Andrew were meeting with a specialist and thinking and planning Preston’s surgery.

The lone hesitation: it is rare for a three-year-old to have Craniopharyngioma. Craniopharyngioma is a rare type of brain tumor derived from pituitary gland tissue. It can present at any age, but its peak incidence is 5-14 years old. Doctors believe Preston was born with it or it developed shortly after his birth.

Three months after surgery, a MRI scan showed new growth—it required radiation. Radiation is not ideal for anyone, but it is especially risky before a child turns eight years old.

“We wanted to wait until he was older, but we didn’t have time to wait,” said Mandy. “The tumor was aggressive; we needed to act. Waiting wasn’t an option.”

Preston’s tumor was on his optic nerves and carotid artery—it was unlikely surgery would be able to remove it all. Three months after surgery—in which he lost his pituitary gland—the tumor started growing back. And it was significant in size.

The situation forced the family to travel to the world-renowned Mayo Clinic for proton beam radiation therapy. Proton beam is deemed to be the best radiation for young children and Craniopharyngioma tumors. And Mayo Clinic is one of only 26 operating proton beam centers in the country and one of only six centers in the Midwest.

“We were very thankful,” Mandy said. “Mayo Clinic has only been a proton beam center for a few years…I don’t know where we would have gone.”

As Mandy said, Preston “flew through proton radiation like an absolute superhero.” He recovered really quickly and has suffered very few side effects. The family waited for the negative side effects for weeks…but they never came. Prior to surgery, Preston was blind in one eye because the tumor crushed his optic nerve. There are future concerns with radiation—more vision loss, hearing loss, strokes, cognitive learning issues, secondary tumor. He will need frequent scans for the rest of his life, but life is whats important.

“It’s overwhelming to think that he barely had a chance at life,” said Mandy. “His life is altered, but he has that chance.”

Losing his pituitary gland means his body cannot control its hormones and functions. Preston will need medication every day for the rest of his life and constant follow-up appointments with scans and blood work, but Mandy said, “Preston is only alive because of modern medicine.”

The family was not familiar with the Ronald McDonald House of Rochester. They had minimal exposure to a Family Room, but “the House is very different.” After a nine-hour consultation during their initial visit, nurses said, “You need to go to the Ronald McDonald House.” The only question for Mandy and Preston…would a room be available?

There were 38 families on the waiting list when Mandy added her name. But only five days later there was a room.

Mandy and Preston were in Rochester without the rest of their immediate family for the majority of his care. Mandy said her “feeling of comfort and safety” at the House enabled Andrew to stay home with their eldest son, Drew, and keep his schedule as normal as possible. And Andrew was able to continue working to support the family financially.

“I don’t think people fully understand,” Mandy said. “It’s an out-of-control feeling when your child is sick—it’s so unbelievably exhausting to deal with the unknown. It’s almost impossible to be a good parent and a family.

“The Ronald McDonald House made it possible.”

And now the House is making it possible for even more families following the grand opening for its expansion in May. The House increased from 42 to 70 guest rooms and added community spaces for children and parents to exercise and rest.

“I couldn’t be happier for all of the families that will be able to stay at the House because of the expansion,” said Mandy. “When you are away from home with kids, it is tiring and costs money. The House takes away that hardship. It becomes home.”

Mandy said she has connected with many guest families, volunteers and staff. The House is a “neat and unique support system” for families. And it has had a lasting impact on Preston.

“When we talk about leaving, Preston is sad,” Mandy said. “That’s so incredible. A three-year-old…who is here for radiation…wants to come back.

“It speaks to the love that we feel at the House.”

And every time they come back, Preston says, “I’m going to see my friends.”

Preston continues to amaze Mandy and Andrew with his no-care attitude as it pertains to his medical condition. He walks into Mayo Clinic like he owns the place. His floppy mop of curls charm everyone into falling in love with him…and giving him what he wants.

The focus has shifted from survive to thrive. Preston is preparing for preschool, but it’s hard to gauge his baselines. But all of that is secondary to the family as it moves forward.

“He’s here; walking and talking—nothing is slowing him down,” said Mandy. “It is not a destination. It’s a journey.

“But we are so thankful.”