Walking with Hannah

Hannah (Photography by Kasey Rimkus, Wonder Photography)

Hannah is very bright. She graduated high school when she was 16 years old and enrolled at Pearl River Community College (Poplarville, Miss.) three days later. Her dream is to teach science or art at a school for deaf children.

But her journey is more impressive than her destination.

Five years ago, Hannah and her family were walking around a store when, all of a sudden…she could no longer walk. Heather, her mother, knew it was serious.

The family lives in a small town in Mississippi, so they traveled to New Orleans for Hannah’s initial medical care. The answers were not good.

Hannah was diagnosed with Complex Regional Pain Syndrome. CRPS is uncommon, particularly in children—she is the youngest person ever diagnosed in New Orleans and most doctors have never treated it. Its cause is not fully understood and the pain is disproportionate and debilitating. Hannah started water therapy and needed a wheelchair for an extended time.

“Doctors told us she would never walk again,” said Heather. “But Hannah is not one to give up—it’s not what she does.”

And her condition worsened.

Hannah was hospitalized for pneumonia and heart complications on multiple occasions. Communication stopped in her body and her organs suffered—appendix, gall bladder, lungs, heart, stomach; it was time for more answers.

Hannah and her mom packed for New York, but doctors in The Big Apple said Mayo Clinic in Rochester was where she should receive care.

The referral was vital—Mayo discovered Hannah has Von Willebrand Disease, which is similar, but differentiated from classic hemophilia. The bleeding disorder is typically mild and relatively common…in adults. The discovery simply added more questions.

“It is not found in children,” said Heather. “And she was 13 when she was diagnosed.”

Hannah (Photography by Kasey Rimkus, Wonder Photography)

The result was regularly scheduled trips to Rochester for blood infusions, symptom assessment, and medicine treatment in 2017.

After creating a plan with her care team for regular appointments only beginning in 2018, Hannah developed anaphylactic reactions and was diagnosed with mast cell disease. Mast cell disease is rare and people with the condition experience unexplained, severe allergic reactions.

The result was more trips to Rochester.

Heather and Hannah have stayed at the House nine times for more than 100 total nights. And they learned about the Ronald McDonald House on their first trip.

“All I knew about the House was that it is an inexpensive place to stay,” said Heather. “But I quickly learned…it’s so much more.”

“The House is so welcoming,” Hannah said. “They are genuinely interested in me.”

The side effects Hannah experiences are significant—she wears a mask in public, she had feeding tubes for a while, she uses a walking stick or a wheelchair for mobility. She was discouraged. But the House was a refuge for her.

“It’s my favorite thing about the House,” said Heather. “No one asks why she is wearing a mask or why she is in a wheelchair. She can be a kid.”

“She feels like she belongs.”

Hannah thrives in the House. She loves playing video games and creating masterpieces. She describes both activities as “great escapes” from her medical issues. And when she walks into the House after a long day: “I check my mailbox!” The handmade cards and gifts are very meaningful and lift her spirits.

And she is always greeted with a smile and a “welcome home.”

“It helps me forget about the hard things I went through that day,” Hannah said.

Hannah (Photography by Kasey Rimkus, Wonder Photography)

Hannah has made lifelong friends while enjoying House Dinners as well.

“I have friends from Alabama, California, Illinois, Iowa, Kentucky, Minnesota, and Montana—literally all over the country,” said Hannah.

“And it’s not Facebook friends,” Heather said. “They are true friends. One family in Minneapolis picks us up from the airport, hosts us at their home, drives us to the House in Rochester, and drives us back to the airport when our stay is over.”

“They’re family.”

And friends are not the only family Heather and Hannah found at the House—volunteers are the heart of the House.

“I will be drawing alone or playing a game alone and a volunteer will come in and start drawing or play with me,” Hannah said. “They invest in me. It makes me feel special.”

Heather and Hannah recall a college student who would spend every night with her…and another who gave Hannah the shoes off of her feet on a wintry night in October.

“She was walking around in the snow without proper shoes,” said Heather. “I will never forget what she did for my daughter…”

“The volunteers are truly incredible.”

“I am more than an illness,” said Hannah. “They see me.”

Hannah (Photography by Kasey Rimkus, Wonder Photography)

Heather and Hannah experienced the House before the expansion…which means they also experienced waiting for a room. But the Ronald McDonald House of Rochester completed an expansion in 2019—the 70-room House is the largest House in Minnesota, 13th largest in the country, and 18th largest in the world.

The expansion will make the wait time significantly less.

“I want more kids and parents to experience the House,” said Hannah.

“No wait list will help families…financially and emotionally,” said Heather.

Heather said her husband always asks are you in the House yet because he is confident in their living situation and he knows they are safe when they are staying at the House.

The House was expanded and is sustained by many generous donors.

“The generosity in Rochester is overwhelming,” Heather said. “Some donation plaques have business names, but some have family names. Another family is supporting my family.”

“It’s very special.”

“Often times…people do things for others because it has personal benefit,” said Hannah. “But not here—not in Rochester and not at the Ronald McDonald House. They do it for me.”

“It’s incredible.”

Hannah is on a long journey. Her medical team will remain with her until she is 22 years old and have transition plans in place for a local doctor—specialty care will no longer be necessary. Her dream is to live independently.

But as Hannah knows…every journey begins with a single step.

“I’m excited for her and her future—a future made possible by Mayo Clinic and the Ronald McDonald House,” said Heather.

Heather and Hannah describe the Ronald McDonald House as their family. Welcoming. Kind. Generous. Supportive. And so much more.

“I do not know where we would be without the House,” said Heather. “It would be hard. We have so much gratitude.”

“Hannah is not simply surviving…she is thriving.”

Hannah (Photography by Kasey Rimkus, Wonder Photography)

Hailey’s Heart

“Hailey is our tough, little bug,” said Tracie, Hailey’s mom. “Nothing is going to stop her – she is going to keep fighting.”

Tracie was thrilled when she became pregnant with Hailey. Her anticipation grew with every appointment; she was excited to meet her daughter. There were no complications or indications that anything was out of the ordinary or wrong.

That changed quickly.

Hailey was born with a heart condition – coarctation of the aorta. It is a narrowing of the large blood vessel that delivers oxygen-rich blood to the body. It forces the heart to work much harder. And it is both rare and life-threatening.

But coarctation of the aorta wasn’t the only challenge Hailey faced. She struggled with pneumonia, ventricular septal defect, tracheostomy, feeding tube, and more. Her lungs are not fully developed and she deals with scoliosis. She also suffers from Noonan syndrome, which impacts her growth and hormones.

After traveling to South Dakota and Michigan for medical care…Hailey ended up at Mayo Clinic in Rochester.

“Mayo Clinic is a wonderful place,” Tracie said. “They care for their patients so well and provide a very personal experience.”

“It’s where we needed to be.”

Hailey and her siblings (Malorie Girres Photography)

The family has visited Rochester and Mayo Clinic for their other two children as well. Their son was born two months early and required a stay in the neonatal intensive care unit (NICU), while their other daughter had a negative reaction to an antibiotic and required hospitalization. Both fully recovered and are doing very well.

“Mayo is our saving grace,” said Tracie.

Hailey has visited Rochester and Mayo Clinic more than 20 times for appointments, treatments, and surgeries. For 16 of those visits and a total of 171 nights…Tracie has stayed at the Ronald McDonald House of Rochester. She knew a little bit about Ronald McDonald Houses, but she learned a lot more on her first visit.

A few family members have stayed at the House occasionally, but Tracie said she has stayed by herself the majority of visits. Even Hailey has been inpatient more often than not.

“The House is such a blessing,” said Tracie. “It provides comfort and security. Because Hailey is often inpatient…I am staying at the House alone. But I don’t feel alone.”

“When I leave the hospital…it feels like I am going home.”

The times Hailey has stayed at the House, she has found so much joy and happiness. She formed a very special bond with the Family Activity Coordinator and is always excited for mailbox “treasures,” which are donated by friends of the House.

“Activities and mailbox items are things for her to look forward to on our trips,” Tracie said. “And she rarely keeps anything; she gives it to her brother and sister or her friends.”

“She has such a big heart.”

Other people with big hearts are volunteers. The House had 1,620 volunteers for 19,088 hours in 2019. Volunteers share time, expertise, and compassion with children and families and are truly the heart of the House.

Hailey and her siblings (Malorie Girres Photography)

“House volunteers are helpful, sweet, welcoming…wonderful,” said Tracie. “So many people care for us – care for my daughter.”

“The House is our home and the volunteers and staff are our family.”

Because Hailey needs frequent care, they have also experienced the disappointment of being on the waiting list and not receiving a room at the House.

The Ronald McDonald House expanded from 42 guest rooms to 70 in 2019. Thousands of donors supported the expansion through the capital campaign and made the expanded House a reality. The House – which is now the largest in the state of Minnesota and one of the largest in the country and the world – hopes its added capacity will greatly reduce wait times for children and families.

“The expansion means so much,” said Tracie. “As a family who needs constant medical care…it is a significant financial and emotional burden. The donors make it possible for us to be in Rochester at Mayo Clinic at the Ronald McDonald House.”

“Their donations are saving her life.”

While Hailey is doing very well, her future is still uncertain. As Tracie described: heart conditions are tricky. But the family takes it one day at a time, enjoys every moment together, and hopes for a full and complete life.

“It’s a different world when you have a sick child,” Tracie said. “But Hailey is incredible strong and brave.”

Rachel in Rochester

Rachel and her mom, Wendy (Photography by Fagan Studios)

Rachel was born very premature—at 26 weeks—and spent the first 108 days of her life in the neonatal intensive care unit (NICU) at Saint Marys. She has spent a lot of time in Rochester. During that time…the Ronald McDonald House of Rochester has been her home.

“We are part of the Ronald McDonald House family,” said Wendy, Rachel’s mom.

After her birth in 2007, Rachel was diagnosed with spastic quad cerebral palsy and relies on other people to help her with daily activities. Sadly, Rachel’s biological mom passed away when she was seven years old.

For the past five years, she has counted on Wendy. After marrying Rachel’s dad, Wendy adopted Rachel in 2018, and has been Rachel’s mom and primary caregiver ever since. Their relationship is unique, hard, challenging…and very special.

“We have a very deep connection,” Wendy said. “She’s my child.”

Rachel and her mom, Wendy (Photography by Fagan Studios)

Rachel’s family has stayed at the House on four separate occasions for more than 60 nights; Rachel has been inpatient for those visits.

The family has visited Rochester other times as well, but the expansion, renovation, and pandemic resulted in less families physically staying at the House. During the pandemic, the House has provided activity bags, food bags, gas cards, meals, and reduced rates at hotels.

“We are always supported,” said Wendy. “We feel very well taken care of by the House.”

The House is an important place for Rachel and Wendy.

Even though Rachel has been inpatient, she has participated in House activities. Her favorite was Paw Pals pet therapy program—she has two dogs and visits were comforting.

Rachel and her mom, Wendy (Photography by Fagan Studios)

Wendy was most impacted by building relationships with other families and the respite the House provides. She values space for relaxing after a full day visiting Rachel in the hospital. And warm meals for children and families were an added joy.

“It’s like an extended family,” Wendy said.

Wendy also shared how volunteers and staff brightened many days and shared in many struggles. February was the three-year anniversary for Rachel’s adoption; she was inpatient once again. The House surprised Rachel and Wendy with gifts and a cake.

“It was unexpected,” said Wendy. “The House made our special day extra special.”

Rachel and her mom, Wendy (Photography by Fagan Studios)

The House completed its expansion in 2019. The expansion will greatly reduce wait times families face for stays and reduce stress and worries.

“So many people make the House such a warm place,” Wendy said. “The Rochester community is so welcoming.

“It’s not our home, but it definitely has a home feel.”

Wendy was both excited and relieved when it opened.

Mayo Clinic has been a positive experience as well. Rachel has been followed by a doctor team for her entire life.

Rachel has a consistent road ahead—regularly scheduled Mayo Clinic appointments for medication and equipment adjustments.

“It is day-by-day,” said Wendy. “Every day is different.”

And Rachel lives every day fully. She enjoys movies, walks, stuffed animals—she is a typical teenager. Her diagnosis does not slow her down.

“She is doing very well…and we are doing very well,” Wendy said. “And we love the House.”

Rachel and her mom, Wendy (Photography by Fagan Studios)

Medically Complex Maddix

Maddix (Photography by LakeHaus Productions, Huron, S.D.)

Since seven-year-old Maddix was born, he has battled pneumonia, strep throat, seizures, acid reflux, migraines, apnea, feeding issues, breathing issues, and more. Doctors do not have one diagnosis—they have several. He is medically complex.

And that is only part of his story.

Maddix was born eight weeks early. When his mom, Tasmah, went into labor, she was life-flighted to Sioux Falls. Both Tasmah and Maddix were in danger.

“I was pretty much dead,” said Tasmah. “I was so sick; I needed to deliver right away.”

Tasmah suffered from HELLP syndrome, a life-threatening condition with serious complications for pregnancy. The condition is characterized by hemolysis, elevated liver enzyme levels, and low platelet levels. Its cause is from pre-eclampsia/high blood pressure and it has wide-ranging symptoms that have lifelong effects.

Despite complications, Maddix was born and immediately moved into the neonatal intensive care unit (NICU). Because Tasmah was dealing with her own sickness, she was unable to see him for quite some time.

Maddix and sister, Kenzington (Photography by LakeHaus Productions, Huron, S.D.)

Maddix graduated from the NICU and was admitted to the hospital, where he had his first fundoplication procedure—a surgery for gastro-esophageal reflux disease. The weeks in the hospital became months. After many tests, consultations, and hospitalizations, doctors recommended the family visit Mayo Clinic in Rochester. Because Maddix was so sick, traveling to Rochester was a challenge—even his first appointments were cancelled.

Once they were at Mayo…things moved quickly.

“We had so many appointments in a two-week time frame,” Tasmah said. “I can’t even tell you how many doctors we saw. Mayo has so many specialists, but they all work together as a team—they all know you and your child.

“As a mom…it’s very special.”

Maddix had another surgery for his reflux, but he was still very sick and still struggling with his breathing. After studies, x-rays, tests, MRIs, and more, doctors discovered a laryngeal cleft. A laryngeal cleft is a rare abnormality involving the larynx and esophagus and negatively affects feeding and induces coughing, among other things.

“The laryngeal cleft explained so much,” said Tasmah. “He was always sick, but never contagious. And it was because he had another rare condition.”

Maddix has traveled to Rochester and Mayo Clinic regularly over the past seven years. He has been both inpatient and outpatient, staying longer than expected on numerous occasions after complications arising from surgeries and infusions. For example: a routine tonsillectomy resulted in more than a one-month stay.

And when stays have become longer than expected…the Ronald McDonald House of Rochester was there for Tasmah and her family. The family has stayed at the House on eight separate occasions for a total of 65 nights.

“You think you’re going to go home, and then you don’t get to go home,” Tasmah said. “So, we stay in Rochester. And we stay at the House.”

Maddix also has high-functioning autism, which makes him sensory sensitive. The House is a calming place for him, which means so much to his mom.

“It’s so overwhelming to think about the House,” said Tasmah. “I can’t believe how people care so much about others. You say thank you, but it’s not enough.

“It’s truly amazing.”

Maddix and dog, Finnley (Photography by LakeHaus Productions, Huron, S.D.)

During stays at the House, Maddix formed a strong connection with Paw Pals. Paw Pals is the House’s pet therapy program, offering children and families the opportunity to connect with pet therapy dogs who visit the House on a regular basis with their dedicated owners.

“The way he acted with the dogs—he was so calm and happy,” Tasmah said. “We added Finnley (a Teddy Bear dog) to our family because of Paw Pals. When Maddix is having a difficult time, Finnley does not leave his side. They have a very special bond.

“And it’s all because of our experience with Paw Pals.”

In addition to activities for her kids, Tasmah said the relationships she formed with other moms and families had a long-lasting positive effect. During a one-month stay, Tasmah and four other moms spent every evening together while their kids played together at the House.

“Everybody is there for different reasons, but everybody is there for you,” said Tasmah. “It was so meaningful to have friends—the House gave us that gift.

“I don’t have words for it…it’s an incredible thing.”

Tasmah also mentioned volunteers and how they keep the House clean and safe for her children and are always willing to listen and go out of their way to make families feel at home.

The Ronald McDonald House of Rochester, like many other organizations, was forced to adjust its services during the COVID-19 pandemic. The House began providing food bags and activity bags for families traveling to Rochester who were unable to physically stay at the House.

Maddix and sister, Kenzington (Photography by LakeHaus Productions, Huron, S.D.)

Tasmah and her family received food and activity bags on a recent visit.

“Even though things are different due to the pandemic, the House still found ways to support us,” Tasmah said. “The House helped us book a hotel room, gave us meals and snacks, games and activities, gift cards for gas stations and restaurants…

“When your child is sick, there is already so much to worry about—the House makes it so you don’t have to worry about those other things.”

Maddix will continue to have appointments at Mayo Clinic in Rochester and the family will continue to stay at the House. And Tasmah says they will continue to support the House in every way possible.

“If you want to support an organization, support the House,” said Tasmah. “We were so overwhelmed by the love and support. It’s real. And it’s incredible.

“We would not be where we are today without the House.”

Maddix and sister, Kenzington (Photography by LakeHaus Productions, Huron, S.D.)

Vision for Robert

Robert (Photography by Reeves Photography)

19-month-old Robert is the healthiest he has ever been. But it hasn’t always been that way.

“When Robert was four months old, we discovered he was having issues—his eyes were cloudy,” said Betty, his mom.

The family visited the hospital in Fargo, but immediately received a Mayo Clinic referral, because North Dakota does not currently have the advancement in medicine to perform the necessary surgery for his condition. And it was deemed an emergency—Robert needed a procedure as soon as possible.

They were in Rochester within 24 hours.

“Mayo is the best hospital in the world,” Betty said. “It is where Robert needed to be.”

Robert was diagnosed with congenital glaucoma—a rare condition often associated with increased intraocular pressure and optic nerve damage. The family and team discussed all options and decided on immediate surgery because his condition was so severe.

“Our entire family was with him in the hospital,” said Betty. “It was incredible.”

The procedure was a success and he was discharged the same day. And the family checked into the Ronald McDonald House of Rochester.

The House had recently completed its expansion, resulting in 70 guest rooms and many new community living spaces.

Robert and family (Photography by Reeves Photography)

Betty described an evening when she made dinner for her entire family while Robert and his siblings played in a Playroom. She talked about the kids making fun and creative projects in the Craft Room and the entire family enjoying the Indoor Activity Room and the Outdoor Plaza.

And described the kids laughing and smiling during Game Night and Music Therapy.

“Staying together as a family…” Betty said. “It was so special for us.”

But the House is much more than four walls.

“The camaraderie…” said Betty. “We are all experiencing medical hardships with our children. It is a very special bond. We are all in it together.

“Community is so important.”

The family stayed at the House before the COVID-19 pandemic postponed family check-ins during the summer months. Their experience with the House staff and volunteers was unforgettable.

Robert and siblings (Photography by Reeves Photography)

“Everyone was so welcoming and made us feel very cared for and loved,” Betty said. “Volunteers are the heart of the House. They help in any way we need.

“They made the House our home.”

Robert and his family have been in Rochester twice since the COVID-19 pandemic postponed check-ins, but the House supported the family in other ways. The House provided activity bags and snack bags for the children and family and facilitated a reduced rate at a hotel.

“The House communicated with us and was here for us,” said Betty. “The House ensured we were cared for and made us feel very loved.

“We waved every time we passed the House, because it is our home.”

Both the expansion and the services offered during the COVID-19 pandemic are possible because of the generous donors who support the children and families of the House.

“Donors care so much and love so much,” Betty said. “They are on the journey with us. It is so beautiful that people know how important the House is for families.

“They give so much joy.”

Robert (Photography by Reeves Photography)

Robert will visit Mayo Clinic every four-six months for checkups—his eyes could increase in pressure, which causes nerve damage and possible blindness. It is important for Robert to remain in close contact with his team, as he also has a genetic disorder which affects multiple organs.

But Betty knows it will all be OK…because of the Ronald McDonald House.

“He is growing so much,” said Betty. “He is thriving.

“It is so great.”

 

The Ronald McDonald House of Rochester is gearing up for Give to the Max Day, Minnesota’s giving holiday on Thursday, Nov. 19. Visit www.givemn.org/rmhmn for updates on Robert and to celebrate and support children and families of the Ronald McDonald House of Rochester!

Robert and family (Photography by Reeves Photography)

Miracle-Child Luis

Luis (Photography by Fagan Studios)

First steps. First words. First birthday. First day of school. Kids have many firsts. Very few have first…tumor.

“Doctors said I wouldn’t walk again…” said Luis. “…if I lived.”

His father, Hector, emigrated from Puerto Rico and lived in Chicago. His mother, Judy, emigrated from Puerto Rico and lived in the Bronx. Both returned to Puerto Rico in their late teens, found each another, and started a life together.

Luis was born in Puerto Rico in 1983.

Early in his life, he struggled with balance and walking. The issues concerned his mom, so he visited the hospital in Puerto Rico. Doctors diagnosed Luis with a neurological issue—his brain was not communicating with his legs. Additional inspection revealed a tumor on his neck. Doctors made an incision and did a biopsy on his tumor. Because Puerto Rico wasn’t advanced in the medical field, doctors didn’t have the equipment or expertise for treating his condition.

“Doctors said I needed help,” Luis said. “But they couldn’t help me.”

The result was an unexplainable, unimaginable story.

“My mom believes a miracle happened in the hospital in Puerto Rico,” said Luis.

Luis (Photography by Fagan Studios)

As Luis and his mom were sitting in his hospital room—discouraged and defeated—a woman walked in and said: “If you want to survive…visit Mayo Clinic in Minnesota.”

As mysteriously as she came…she was gone.

His mom researched Mayo Clinic and found one in Florida and one in Texas, but she had faith and believed it was a sign. Six months later—March 1990—Luis and his family were in Minnesota. The six-year-old was embarking on a lifelong journey.

Mayo Clinic diagnosed Luis with Neurofibromatosis—a genetic disorder affecting the nervous system. There are two types: NF1 and NF2. NF1 is the more common type and characterized by discolored skin, growths, enlargement and deformation of bones, and curvature of the spine. Tumors may also develop on the brain, cranial nerves, or spinal cord.

The question was not are there tumors…the question was how many tumors are there.

“I have tumors all over my body,” Luis said. “I have tumors in my arms, in my chest, behind my eyes, and more. Tumors attacked my neck and spine.”

Luis (Photography by Fagan Studios)

The tumor on his neck was large—it covered C1, C2, and C3 cervical vertebrae. It fused to the bone—it was holding his neck together. Doctors removed the tumor in a high-stakes surgery. Surgery was as successful as possible, but Luis needed a neck fusion and a full body halo for the next year and an additional six months in a wheelchair. Best scenario: paralyzed for life. Worst scenario: less than one year of life.

That was 30 years and 100,000,000 steps ago.

“I have had 10 total surgeries,” said Luis. “I have had tumors removed from my neck and trachea and I may need one removed from my eye. But I keep on living; keep on walking.

“I can. I will. I must.”

Doctors also said Luis would never play sports. He played basketball, football, and was a longtime boxer.

“Everything I was told I couldn’t do…I did,” Luis said.

The Ronald McDonald House of Rochester was founded as Northland Children’s Services in 1980. After operating for 10 years as Northland House, it was invited to become a licensed Ronald McDonald House in 1990…when Luis sand his family arrived in Rochester.

When Hector learned his son needed medical care in the United States, he informed his employer—a famous lawyer in Puerto Rico—he would be leaving. He connected Hector with government officials and communicated with Mayo Clinic and the House. Plans for Luis happened fast…and saved his life.

“The House was our home for a long time,” Luis said. “It’s still our home.”

Luis (Photography by Fagan Studios)

Following the first surgery, his dad returned home. After a couple months, he was back in Minnesota. Luis and his parents, sister, aunt and uncle, cousins, grandparents, and more, made Rochester their permanent home.

“Everything worked out the best for everybody,” said Luis.

Luis remembers his time in the House fondly, reminiscing about his best friend from Ukraine and his mom connecting with other moms. Visiting the recently completed expansion—which made the Ronald McDonald House of Rochester one of the largest Ronald McDonald Houses in the world—was emotional for Luis.

“The new House…” Luis said. “…it shows families—everything will be OK.”

Luis visited the House for the first time in decades when Subaru of Rochester made a donation during its Share the Love event in June 2019. Luis was a Product Specialist for Subaru of Rochester for four years and is now Special Finance Manager for Nissan of Rochester, part of the Penz Automotive Group.

“The opportunity; the door Todd opened…” said Luis. “He didn’t have to hire me; didn’t have to give me a chance. But he did. And I am forever thankful.”

Luis is making the most of his opportunities.

“I want to make a difference,” said Luis. “I want to be involved with the community. I want to help kids. I want to motivate others.”

Luis (Photography by Fagan Studios)

Subaru of Rochester selected the Ronald McDonald House of Rochester as its charity of choice for the Subaru of America Share the Love event in 2019-20, donating $250 for every new vehicle purchased and an additional $50 for the House…resulting in a $32,230.36 donation!

The commitment to the children and families at the House was simply another reason Luis is proud of his work.

“Tell children and families: everything will be OK,” Luis said. “And it will be OK because of people like Todd and companies like Subaru.”

There are more surgeries in his future, but Luis is staying optimistic.

Only one doctor from his original surgery is still practicing. When he sees Luis in the hall, he asks, “How is my miracle child?”

“My mom calls him our angel,” said Luis.

“My mom always said I should share my story,” Luis said. “But it’s not only my story. My mom, my dad, my family, the Ronald McDonald House—it’s our story.”

And what a story it is!

Luis (Photography by Fagan Studios)

Curious Case of Camilla

Camilla (Photography by Crystal Hedberg Photography)

Spacing out. Drooling. Odd facial movements. It wasn’t normal, but it wasn’t super concerning. Until it was.

“We started noticing seizures—very focal seizures,” said Lindsey, Camilla’s mom. “The first thing I did was call Mayo Clinic—it is the best hospital in the world.”

Camilla’s grandfather suffered from a brain tumor and Mayo Clinic treated him, so Lindsey was familiar with the process. Unfortunately, her experience was necessary.

Mayo Clinic diagnosed Camilla with a brain tumor. It was originally considered benign, but there were significant complications. The doctors ordered a 48-hour electroencephalogram (EEG) to detect abnormalities in Camilla’s brain waves and electrical activity in her brain. The results were staggering.

“The EEG revealed eight seizures—almost all occurring in her sleep,” Lindsey said. “We didn’t even know it was happening at night.”

One significant issue was both of Camilla’s arms were moving during seizures, indicating that the tumor was likely near the motor skills area of her brain. Because of the location of the tumor, doctors were concerned about conducting a rather risky surgery. They told Kody and Lindsey that Camilla “may never walk again or it may be a long time before she does” and her “left side—face and body—may be numb or paralyzed.”

“That’s my baby,” said Lindsey. “I said: ‘I want it out of her.’ The sooner, the better.”

Surgery was successful, but doctors were still worried about her motor skills. The next morning…Camilla miraculously walked and her left side was functioning normally.

It wasn’t easy, but it was done. Until it wasn’t.

Lindsey, Delilah, Estelle, Kody, Camilla (Photography by Crystal Hedberg Photography)

Two weeks later, pathology revealed Camilla’s tumor was malignant and Grade III—it was cancerous, it spreads and it tends to come back. Her prognosis was three years.

“Our world was turned upside down,” Lindsey said.

Camilla needed proton beam radiation—33 treatments over seven weeks. Rochester is not particularly close to home and Kody and Lindsey have two other daughters.

“There were so many questions,” said Lindsey. “How do we do this? Where do we stay? How do we continue working through this? The news of cancer was so overwhelming, and the logistics made it more overwhelming.”

That is when a Mayo Clinic social worker told them about the Ronald McDonald House of Rochester. Kody and Lindsey didn’t know much about the Ronald McDonald House, but their stay would drastically impact Camilla’s recovery.

“When we moved into the Ronald McDonald House, everything changed for Camilla,” Lindsey said. “Instead of focusing on her therapy and all of her pain and fears, she focused on the Ronald McDonald House.”

Camilla made friends with kids of all ages; Lindsey felt supported by other moms. The family enjoyed activities and dinners. It became home.

“My other daughters also loved the House and wished they could join Camilla more often,” said Lindsey.

Camilla, Estelle, Delilah (Photography by Crystal Hedberg Photography)

Lindsey and Camilla moved in as the House finished its expansion. The family especially enjoyed the indoor activity room and outdoor plaza—for expending energy.

“I didn’t know what to expect and I was blown away,” Lindsey said.

Lindsey said the House eased their burdens on a very painful journey. Volunteers help relieve stress by doing anything and everything for children and families, including cleaning areas multiple times each day. Lindsey said the House is “spotless” and a “very safe place for kids undergoing cancer treatment.”

“Volunteers are all so loving, kind, and compassionate,” said Lindsey. “They all had a smile on their face and made us feel welcome.

“I hope I can volunteer at the House one day.”

Camilla’s case is not closed—she will come back every three months for a MRI. However, following surgery and proton beam radiation…it was all clear. There is no tumor. But the prognosis doesn’t change: because it is Grade III, chances are high it will come back.

Through it all, Kody and Lindsey have been impressed with Camilla’s attitude strength and resiliency. And it all started at the Ronald McDonald House of Rochester.

“When Camilla finished her treatment and rang the bell, she didn’t want to leave the House,” Lindsey said. “For her birthday, she wants to have a party at the House. She will never forget the friends she made, and continues to pray for them.

“The House is so special.”

Camilla (Photography by Crystal Hedberg Photography)

In Her Words: 40 Years

In the background, hanging on the wall, is a Jane Belau work of art; a heart with a bouquet of flowers. All proceeds from the sale supported the Ronald McDonald House of Rochester. It hangs in Cynthia’s living room.

Cynthia Nelson is an Emeritus Trustee and reflected on her time at the Ronald McDonald House of Rochester, Minnesota, and its 40 years serving children and families…in her own words!

I was working at Mayo Clinic in the early 1980s and I was in the personnel department, as was Dave Senjem, who is now in the Minnesota Senate. He was on the Board for Northland Children’s Services. I wanted to get involved in the community, but I was less interested in joining a service club to raise money for charity; I wanted to work with charities directly. Dave completed his term and nominated me for the Board.

Once I was in…the House almost became my second home.

People ask, “How can you spend your time around sick children?” In my eyes…the children at the House have so much joy. They are sick, but they are celebrating life every day. And their smiles light up the room. I learned many life lessons from observing and interacting with the children and families at the House.

The House has gone through many changes, but its purpose and goals have remained constant. Mayo Clinic says: needs of the patient come first. The House says: needs of the children come first. The House surrounds the kids with as much normalcy, consistency, and support as it can. It is so important for the kids and their families.

When I was nominated…I was shocked. I had no idea. Phil Henoch said: “An Emeritus Trustee is someone who has a long history of involvement and a passion for the House.” Involvement and passion were key. An Emeritus Trustee does not always have a formal role, but we are always available for the House. Always.

I was on the Love Tremendously Hope Exceedingly capital campaign leadership team. People invested extraordinary effort, often behind the scenes, for the larger House to become a reality.

The grand opening and ribbon cutting was a very special moment; we all witnessed the joy on the faces of children and families. It was all so beautiful and supportive for our guests.

I cannot believe it has been 40 years…until I look in the mirror! I drive down the street and it is all so amazing. The House has come a long way from shared bathrooms and board meetings in the living room.

But the core motivation is the same: how can we help children and families experiencing extreme worry and upheaval in their life?

I love watching the children enjoy House activities. Every child who walks through the doors of the House is special.

It has been a very great honor to be able to help the House in any way I can. In many life situations, people say, “I gave more than I received.” I think it is the other way around at the House.

I receive far more than I give.

Will you help us celebrate 40 years with a gift of $40?
https://www.classy.org/campaign/celebrating-40-years/c288676
Thank you for supporting Ronald McDonald House children and families!

Remi’s Life-Saving Scan

Remi (Photography by Laci Eberle Photography)

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, Remi, Reese, Casey (Photography by Laci Eberle Photography)

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.

Remi (Photography by Laci Eberle Photography)

“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.”

Katelyn, Remi, Reese, Casey (Photography by Laci Eberle Photography)

Nolan’s 38 Weeks

Nolan (Photography by Fagan Studios)

Nolan is very energetic. He is happy, go-lucky. He is a jokester.

But suddenly…Nolan wasn’t being himself. He was quiet. He was moody. He had night sweats. He had a headache. He was constipated. He was vomiting.

Was it a sinus infection? Was it strep throat? Mono? Lyme disease?

Josh and Tina’s parent instinct said it was something serious.

“It was the start of a long journey,” said Josh, Nolan’s dad.

After months of dealing with common illness and taking common medication, Nolan and his parents, grandparents, and siblings, prepared for Halloween night—he was so excited for trick-or-treating. But a couple hours into the holiday event, Nolan said he didn’t feel well. He started vomiting.

“We packed, loaded the car, and were in Minneapolis within a couple hours,” Josh said.

Nolan (Photography by Fagan Studios)

The family visited Children’s Minnesota for further evaluation and testing. The scans revealed it was a sinus issue…but it was a tumor in his sinus. A biopsy confirmed the findings.

“It was a lot,” said Josh. “It was a lot for an eight-year-old and it was a lot for us.”

Doctors recommended an aggressive treatment plan: chemotherapy for 38 weeks—nearly 10 months. He would receive normal chemo every week and endure a one-month stretch at Mayo Clinic in Rochester for proton beam radiation therapy.

“Chemo was hard on him,” Josh said. “It was hard to watch.”

Josh described their time at Mayo as an “awesome miracle.”

Nolan (Photography by Fagan Studios)

“You hear about Rochester and Mayo, but you never think you or your family will need it,” said Josh. “It’s such a blessing.”

And for the duration of their time in Rochester, Nolan and his parents have stayed at the Ronald McDonald House of Rochester. Josh and Tina assumed it would be weeks before they received a room in the House—they heard there was always a waiting list. But when they arrived and talked to a Mayo social worker, she said: “You will definitely have a room.”

Josh and Tina did not know the Ronald McDonald House of Rochester expanded.

The family was in less than 24 hours later.

“The House is incredible,” Josh said. “There is so much support for Nolan and our family. We are so lucky—it would have been such a challenge without it.”

The expanded Ronald McDonald House of Rochester has 70 guest rooms and many new community spaces and underground parking for families. It is the largest House in the state of Minnesota, 11th largest in the country and 17th largest in the world.

“I see the plaques; I take notice,” said Josh. “People and businesses donated rooms and supported my son and my family…

“I can’t describe it.”

Nolan (Photography by Fagan Studios)

The House was a place for the entire family. Nolan and his parents were in Rochester while his older siblings were hours away with his grandparents. But on weekends…the House was their home as well.

“The House is such an inviting atmosphere,” Josh said. “It is comfortable. We discussed renting an apartment or a house, but the House is the best environment for Nolan.

“It has definitely made a difference.”

Volunteers are a primary reason the House is a warm place. The House received 19,086 volunteer hours from 1,620 volunteers in 2019.

“House volunteers are amazing people,” said Josh. “They make you feel safe and give you peace. The smiles, care, connections—it all means so much.”

As his dad said…Nolan is on a long journey. The tumor is in a dangerous location. There is a 70 percent chance chemotherapy will clear it…but there is a 30-50 percent chance it will return within two years. And if it comes back…it will be even more dangerous.

“It’s all statistics,” Josh said.

For now, Nolan is going on with life and keeping the faith.

“Because the journey is not over,” said Josh.

Nolan (Photography by Fagan Studios)