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Ethan: More Than Meets the Eye

Ethan (Artistic Expressions, Rock Rapids, Iowa)

Surprises are generally good, but when Ethan was born…it was a challenging surprise for him and his parents.

“You can’t see it on an ultrasound,” said Kim, Ethan’s mom. Doctors in our hospital had never seen anything like it. No one knew what it was or what was in store for him.”

Ethan was born with giant congenital nevus, a disorder characterized by skin lesions (spots) and possible tumors. He has thousands of spots of all shapes and sizes all over his skin and even a large nevus that makes it look like he is wearing a pair of brown shorts—it stretches from the middle of his back to just above his knees. Ethan also has neurocutaneous melanosis, which means he has spots on his brain. It is a rare disorder, affecting 1 in 500,000 people.

But they quickly learned Ethan was “extremely lucky.”

Ethan and his parents, Jeff and Kim (Artistic Expressions, Rock Rapids, Iowa)

“When he was born, he had several very large lumps across his back that were the size of large eggs,” Kim said. “We did not know if these growths were cancerous. We worried about his spinal cord and brain being affected. But it was not the worst-case scenario.”

Because the hospitals near their Iowa hometown do not have pediatric dermatology or neurology departments, the family traveled to Mayo Clinic in Rochester for the first time when Ethan was only 10 days old. They traveled to Rochester 13 times in the first year for clinic visits, MRI’s, and multiple procedures with a pediatric plastic surgeon.

Ethan’s first surgery was when he was just four months old, to remove the very large growths across his back. Another surgery resulted in more than 25 inches of incisions up and down his little legs and back. The pain was “excruciating.” But his condition slowly improved, and he experienced no setbacks.

“Ethan has grown so much,” said Kim. “He is resilient. He is an amazing kid.”

Ethan (Artistic Expressions, Rock Rapids, Iowa)

Appointments have gradually declined over time, as Ethan now needs only one or two visits per year. It is an upward and positive trend. They are always on the lookout for signs that one of the nevus spots could signal a change to skin cancer and they watch to make sure the brain spots do not cause neurological issues. But he is blessed to have no issues to date.

Kim heard generalities about Ronald McDonald Houses, but she did not know specifics. They did not stay at the House on their initial visit, but stayed for the first time after Ethan’s surgery when he was four months old…and have stayed at the House on 11 separate occasions over the past 13 years.

She described walking through the doors as “incredible,” particularly for parents in very stressful and scary times. Clean spaces, welcoming faces, and stocked food pantries made the family feel safe, comfortable, and “at home.”

While there is nothing normal about being away from home and dealing with a health crisis, Kim said the House provides families with a “glimpse of normalcy.” Families can prepare and eat meals together in the kitchens and unwind in the living spaces, like they would at home. The family has celebrated holidays and even birthdays at the House and Ethan “always felt special when he was there.”

Ethan and his parents, Jeff and Kim (Artistic Expressions, Rock Rapids, Iowa)

“Ethan wasn’t scared when he was at the House,” said Kim. “He loves staying at the House more than a hotel. Ethan played with the Thomas the Train table for hours when he was little and, now that he is older, enjoys the Game Room. Coming back to the House was always an incentive for Ethan to get up and moving after surgery, so he could get discharged from the hospital sooner.

And the House proximity to Saint Marys Campus is important.

“We could run home and eat, nap, shower,” said Kim. “We did not want to leave Ethan alone for very long at the hospital. And we did not have to…because of the House.”

Kim said House volunteers are “amazing; always investing in the kids.”

“Their time and effort are generous donations,” Kim said.

The House is supported by many generous donors and companies, both in the Rochester community and beyond. And while Rochester residents may not stay at the House, they probably know someone who has or will need the House at one time or another. Their financial and in-kind support is so important.

Ethan (Artistic Expressions, Rock Rapids, Iowa)

“It is humbling how much Rochester and the surrounding communities invest in the House,” said Kim. “Donors have a direct impact on families. And it truly shows community pride.”

“The House is invaluable.”

Fast forward 13 years and Ethan is a smart, energetic teenage boy. He is in school and enjoys activities, such as swimming, watching dirt track racing, and sports activities—particularly after a recent undefeated season in junior high football.

And he loves helping others.

Since their first stay in 2009, Ethan and his family have collected pop tabs to raise awareness and support for the Ronald McDonald House of Rochester. They have donated approximately 2000 pounds of pop tabs over 13 years. Friends and family, community members and strangers collect pop tabs for Ethan and the House.

“We love coming home to bags of pop tabs—large or small—sitting on our doorstep,” Kim said. “It’s an honor to give back to a place that has given us so much, on behalf of our friends, family, and community.”

“It does not cost anything, and it is an easy and free way for people to give back to the House. And it makes a difference. One pop tab can turn into something more—so much more.”

“Contributing to the House gives every single person the ability to be a part of something bigger. The House changes people. It makes us better. I like to say that we are better people after getting the opportunity to be inspired by the House.”

Ethan’s prognosis is positive—his skin spots have some minimal negative side effects and people are naturally curious about his spots. But he deals with the challenges with maturity and grace.

“Many people do not know his story; they only see his skin,” said Kim. “But the House knows him; and the House sees him.”

Ethan and his parents, Jeff and Kim (Artistic Expressions, Rock Rapids, Iowa)

Ronald McDonald House of Rochester forges new path under Mueller’s leadership

Nick Mueller, Chief Executive Officer

As the Ronald McDonald House of Rochester, Minnesota, prepares for the future as one of the largest Houses in the world, Nick Mueller is leading the organization as its new Chief Executive Officer.

The Board of Trustees selected Mueller, a career nonprofit professional with a background in community engagement and development, following a comprehensive nationwide search.

“Nick possesses the knowledge, experience, and leadership skills to enhance the House’s mission for the children and families it serves,” said Hilary Stonelake-Curtis, Board President. “The House will excel as a both an organization and a community partner under his direction.”

The change comes as the House embraces its role as a premiere Ronald McDonald House within the Ronald McDonald House Charities system. The 70-room Ronald McDonald House of Rochester is the largest Ronald McDonald House in the state of Minnesota, the 13th largest in the country (186 in the U.S.), and the 18th largest in the world (380 worldwide).

Mueller joins the House from Mayo Clinic, where he served most recently as Vice Chair of Development Operations, managing development’s operations spanning three sites for more than 200 staff. Mayo experienced unprecedented growth while Nick filled three positions (Interim-Chief Development Officer and Director, Annual and Mid-Level Giving) from 2017-2022.

Prior to his time at Mayo Clinic, Mueller was the Managing Director, Community Engagement for the American Cancer Society. He was with the organization for seven years in three other capacities (Senior Director, Community Relations Manager, and Community Events Fundraiser).

A resident of Rochester since 2009, Mueller received his Master of Business Administration degree from Augsburg College, after receiving his Bachelor of Arts degree from Concordia College in Moorhead.

Founded in 1980 as Northland Children’s Services, the Ronald McDonald House of Rochester, Minnesota, provides a home away from home and offers support to families seeking medical care for their children. For more information, visit www.rmhmn.org.

Ronald McDonald House of Rochester, Minnesota

Joyful Javohn

Javohn (Photography by Fagan Studios)

Javohn and his dad, Thomas, did not expect such a long and difficult journey. But after two tumors and one year of radiation and chemotherapy…it is almost time for Javohn to rejoin his five siblings in Belize.

“He is a fighter; he is strong,” said Thomas. “And he has so much joy.”

When doctors in Belize – a Central American country with less than 500,000 people – discovered a tumor on Javohn’s brain, they said, “Take him to the United States…if you want him to live.” His first surgery was in Denver and it was successful, but he would need a second surgery at Mayo Clinic in Rochester. After the surgery, doctors recommended radiation treatment for three months. All was well.

One year later, during a routine checkup at Mayo Clinic, doctors discovered the brain tumor was gone…but he developed a tumor on his skull. Javohn needed eight months of chemotherapy. The treatment plan was hard on his body, particularly his kidneys. But it is almost time to go home.

Thomas (dad), Javohn, Doret (mom), and Thomas Jr. (brother) (Photography by Fagan Studios)

“It is rough,” Thomas said. “This is the first time our family has been apart. But it is something we need to do.”

When they first arrived in Rochester, they stayed at a hotel because their situation was short-term; when they learned about the additional treatment, they were referred to the Ronald McDonald House of Rochester.

“I was shocked,” said Thomas. “I did not expect this hospitality. It is truly a home away from home. It is amazing.”

Thomas mentioned the volunteers who made them feel welcome, despite it being a different country and culture. And how he can only say thanks to the donors who have provided so much for him and his family.

“The House has everything we need,” Thomas said. “It is perfect.”

Javohn (Photography by Fagan Studios)

“It keeps my mind off of the hard things that I am going through,” said Javohn.

Javohn’s mom, Doret, and Thomas have taken turns staying at the House and caring for their other children in Belize. One of his brothers, Thomas Jr., has visited as well. But Javohn has not seen his other four siblings, including his twin sister, in nearly one year.

“I talk to her every day,” Javohn said. “I miss them all so much.”

“It is always noisy at our house,” said Thomas.

Javohn and Thomas experienced many firsts during their time in Minnesota, including snow and sub-zero temperatures. It is rare for the temperature to drop below 60 degrees any day in Belize; Rochester was negative-15 degrees on a February day.

“They said it would be cold,” Thomas said. “It is different in Minnesota than it is in Belize. But the House provided winter clothing and Mayo Clinic is connected by walkways.”

“We were very thankful.”

Even though it is summer in Minnesota, Javohn is excited for summer at home.

“I cannot wait to fish, farm, and work,” said Javohn.

Thomas (dad), Javohn, Doret (mom), and Thomas Jr. (brother) (Photography by Fagan Studios)

The family grows its own ground food – plantains, carrots, potatoes, sweet potatoes, watermelon, pumpkins, papayas, bananas, mangoes – which Javohn enjoys harvesting. Mangoes are currently in season and particularly delicious.

Javohn and Thomas are excited to be on the water back home, but they were able to experience fly fishing and ice fishing with a friend in Minnesota. They described the latter as “crazy, but fun!”

“This is the most time he has ever spent inside; he is always outside,” said Thomas.

Javohn will need medical evaluations every three months for the next two years. Each visit should be short in duration. Doctors are currently working on a plan for Javohn to be seen closer to home, but as Thomas said, “The Ronald McDonald House is our home.”

“The House kept Javohn alive,” Thomas said.

Thomas (dad), Thomas Jr. (brother), Doret (mom), and Javohn (Photography by Fagan Studios)

Every Day with Elian

Jesus and Leamsie have two beautiful sons: Elian and Adrian. And after spending 323 nights at the Ronald McDonald House of Rochester, Minnesota…they are thankful for every day they have together.

Elian, their oldest, was diagnosed with a cancerous brain tumor in early 2019. And the tumor was located in his meninges – the three membranes that envelop the brain and spinal cord. It is an incredibly rare complication.

Because it is so rare, no medical professional in their home country of Puerto Rico had ever seen such a diagnosis, let alone treated someone with the diagnosis. Jesus and Leamsie searched far and wide for better resources and medical facilities.

And it led them to Rochester.

“We arrived at Mayo Clinic with scared hearts, but full of hope,” said Leamsie, Elian’s mom. “As parents, we not only had to deal with the terrible news that our beloved son had cancer, but we were also facing an unknown medical scenario.”

Because the condition has similarities to medulloblastoma – a tumor that affects the central nervous system and is most commonly found in the cerebellum – it was treated in a similar way. Elian underwent 22 cerebrospinal radiotherapies and five chemotherapies.

He experienced numerous complications, including hydrocephalus, a condition which requires a ventriculoperitoneal (VP) shunt to be implanted to relieve pressure on the brain from excess fluid. Elian required surgical intervention 13 times; 10 involving VP shunt revisions.

It was a long and difficult road.

And it led them to the Ronald McDonald House of Rochester.

The family received a referral from a Mayo Clinic social worker, but they were 26th on the waiting list. As they paid for the final night in a hotel that they could afford…they received a call from the House. There was a room for their entire family.

“We felt peace in that moment,” Leamsie said. “The House is a good and safe place, full of love, goodness, and wonderful people.”

But they didn’t know it would be their home for the next year.

“We were going through the worst moment of our lives,” said Leamsie. “In the House, we found an oasis where we could leave our worries: what to eat, where to sleep, where to be a family, where to find support from friends. We fell in love with the House.”

The family stayed in the newly opened expansion and was amazed by the amenities. Guest rooms, community kitchens, laundry facilities, recreational areas: “everything was spectacular.” Family centered activities and family focused volunteers and staff filled their stay with joy and love.

“Every smile made us feel welcome…when we were more than 3,870 kilometers from away from home,” Leamsie said.

Leamsie said their extensive stay allowed them to see that each dollar donated to the House “reaches where they say it does: the kids and their families.”

“Thank you to all the donors who support the House,” said Leamsie. “Our family urges everyone we know to support this beautiful cause.”

While Elian and his family received the world’s best medical care, he did not respond to treatment as well as expected. The family consulted with his doctors and decided to return to Puerto Rico to be with family for the remainder of his life.

His life expectancy at the time was six months.

“It has been nearly two years and he is still with us,” Leamsie said. “We are so thankful for every day we have with him. And we are so thankful for the year we spent together as a family at the Ronald McDonald House.”

Growing with Evangeline

Evangeline means good news. For mom and dad, Karissa and Ryan, the good news had complications…and came three months early.

“Karissa was being seen for a routine prenatal appointment when she was diagnosed with severe pre-eclampsia,” Ryan said. “They transported her to Rochester by helicopter.”

“It was scary.”

The result: Evangeline was born three months premature. She suffered from Atrial Septal Defect (ASD) — a hole in her heart — and Pulmonary Arterial Hypertension (PAH). And she was at risk for many other things: spontaneous brain bleeding, gastrointestinal complications, eye malformations and loss of vision, cerebral palsy, and more. Because of these complications and their effect on her lungs, Evangeline was placed on oxygen.

But as she grew and reached her original due date, their concerns began to fade.

“She has not had any major complications,” Ryan said. “She has good vision, her gut and stomach work as they should, and she does not show any negative brain functioning symptoms.”

Evangeline is no longer on oxygen and her ASD — which will eventually be closed by catheter or open-heart surgery — does not require medication. Currently, her heart condition “causes her to tire out faster than other children.” But once it is closed, her endurance will be “the same as any other child.”

“Evangeline has monthly follow-up appointments with different specialists and will need surgery in the coming years, but her future is very bright,” said Ryan. “She is strong and healthy and is further developing her personality.”

“She brightens our lives each and every day.”

When Ryan and Karissa arrived in Rochester, they were somewhat familiar with Ronald McDonald House Charities, but the more they learned about the Ronald McDonald House of Rochester…the more they were amazed.

“Living through an acutely traumatic experience — premature delivery of our daughter — and a stressful situation — 100-day NICU stay — made the House even more important,” Ryan said. “The people were kind, genuine, caring, and present.”

Among those people were volunteers and staff, who Ryan said, “helped keep him grounded and reminded him how blessed they were as a family.”

The House navigated uncertain times by expanding its services outside the House. Children and families received activity bags and food bags for convenience during extended periods away from the House.

“Evangeline lived in an incubator for many weeks,” said Ryan. “Activity bags had books we could read to her — it helped us feel more connected. We would miss lunch orders, so we utilized food bags and other fresh food items available in the House.”

“It all made a difference.”

The House is supported by many local businesses and individuals. Guest rooms, in-House activities, meals, food bags and activity bags, gas station, grocery store and restaurant gift cards — all are available because of their generous support.

“Thank you,” Ryan said. “You make an impact of a magnitude that I have never experienced. You provide for families who are suffering deeply. You provide comfort for those who desperately need it. I cannot imagine how drastically more difficult my family’s experience would have been without your generosity. Truly…thank you.”

“Whether it is time, finances, skills — whatever help you provide blesses those who cannot prepare for the road they are traveling that led to Mayo Clinic and the Ronald McDonald House. Please continue to help the kids who are being called to rise up during the most challenging experiences of their lives. Please continue to help the mothers and fathers, who can do nothing but read their sons and daughters a book while they fight for their lives.”

“Please continue to support the House.”

Evangeline and her parents will visit Rochester less frequently as she grows, but they look forward to stopping by their home away from home…the Ronald McDonald House.

Faith and Love

Faith and her moms, MaryAnn and Sheila (Photography by Fagan Studios)

When MaryAnn became pregnant, she was both happy and shocked. However, her doctor declared her a high-risk pregnancy and referred her and her wife, Sheila, to Mayo Clinic in Rochester.

“I was scared the whole pregnancy,” said MaryAnn. “But I received so much support and I fell even more in love with our daughter as time went on.”

Faith was born with Trisomy 21 – Down syndrome – with a heart defect. T21 occurs in 1 out of every 691 births and causes a child’s body and brain to develop differently.

“It was very scary and so emotional,” MaryAnn said. “But we were where we needed to be…in Rochester and at Mayo Clinic.”

Faith and her moms, MaryAnn and Sheila (Photography by Fagan Studios)

Faith received the best care and was stable and in good health.

Shortly after her birth, MaryAnn and Sheila learned about the Ronald McDonald House of Rochester from a Mayo Clinic social worker. Before that conversation, they didn’t know anything about the House.

“It quickly became our second home,” said MaryAnn. “The staff and volunteers accepted us and showed us love and support; they treated us like family.”

“Their open arms and open hearts made a difference.”

Faith and her moms, MaryAnn and Sheila (Photography by Fagan Studios)

MaryAnn shared how the House impacted her family in a positive way: meals, art, games, words and smiles – it all meant a lot. Even when the family has been unable to physically stay at the House, they received food and activity bags and gas cards.

And she will never forget the people who made it possible.

“Everyone who has donated to the house…thank you,” MaryAnn said. “You are amazing people and you made our lives so much better.”

Faith will be a regular visitor to the Ronald McDonald House, Mayo Clinic, and Rochester. Her heart defect requires echocardiograms – a test using high frequency sound waves – often and multiple studies: feeding and nutrition, sleep, hearing, weight, etc.

She will also need a Glenn procedure – an open-heart surgery – in the near future.

And the family of three will always have a place to say: their second home.

“The smiles at the House are pure love.”

Faith and her moms, MaryAnn and Sheila (Photography by Fagan Studios)

Having Fayth

Ashley and Moses were flying high – their daughter, Fayth, was born and she was beautiful and in perfect health. Two months later…their daughter was airlifted to Mayo Clinic in Rochester.

She needed a new liver.

Fayth was diagnosed with biliary atresia, a rare liver disorder that occurs when a baby’s bile ducts become blocked. It is neither hereditary nor genetic and its cause is unknown. The result can be serious liver damage and can require a liver transplant.

“We couldn’t treat her in our hometown because it doesn’t have a doctor familiar with biliary atresia,” Ashley said. “Mayo Clinic is where we needed to be.”

And it was there that she received her new liver.

Before the diagnosis, Ashley and Moses were not familiar with Mayo Clinic and had never heard of the Ronald McDonald House of Rochester. Both changed rather quickly.

Ashley and Fayth traveled together, as Moses stayed home with the other children. Ashley said it was stressful and scary; she had never been away from home for an extended time and they did not know anyone in Rochester. But that changed quickly as well.

“We never felt alone,” said Ashley. “The House is so warm and welcoming.”

The House provided food and activity bags for Ashley and her family – even her children who were back home. Fayth’s favorite toy was a xylophone, which helped her learn to sit up.

Ashley stayed at the House while Fayth was inpatient for her liver transplant and they stayed at the House together following her transplant.

Ashley commented on the guest rooms and community spaces and how they were “spacious and beautiful.” And she appreciated how clean it was; especially during a pandemic and with a daughter who had surgery.

“Fayth and I feel safe at the House,” Ashley said. “After her transplant, I was afraid to take her to hotels, stores, restaurants; but the House is so clean.”

“It gave me so much confidence.”

Volunteers regularly disinfect and sanitize common spaces at the House. They also do anything and everything to make the children and family feel at home.

“The volunteers made our stay memorable,” Ashley said. “They treated us like friends – like family. They answered all of my questions and were so helpful.”

“I will remember their love and care forever.”

Another burden eased by the House was the Fresh Food Co-Op. The space opened in 2019 and provides children and families with fresh and healthy perishable food items, such as protein, produce, dairy, and more, at no cost to the families. The Fresh Food Co-Op is the first of its kind in a Ronald McDonald House.

“I was so worried she would get sick or I would bring the sickness back to the House,” said Ashley. “The House provided everything we needed and everything we wanted.”

“Comfort and convenience in a stressful situation are so helpful.”

The Ronald McDonald House of Rochester is supported by hundreds of individuals, groups, and businesses. Their support makes it possible for the House to provide for children and families throughout the year. In a year of uncertainty, supporters ensured the House would keep its doors open.

“Thank you,” Ashley said. “We were so scared. We didn’t know how we would pay for a hotel and meals. We didn’t know how long we would be in Rochester. We don’t know if we would have been able to make it work.”

“The House took that burden off of our shoulders.”

Fayth has a long road ahead. Her health and new liver mean lifetime appointments at Mayo, which will decrease in frequency as time goes on. But, for the time being, Ashley and Moses are celebrating their happy and healthy daughter.

Ashley said she will not forget the impact the House had on her family.

“The Ronald McDonald House made a rough time in our lives a wonderful experience.”

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)

 

Hannah shared an update in the August 2022 edition of News from the Heart

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.”