Josiah’s 3,000-Mile Journey

Josiah (Photography by Fagan Studios)

It’s hard to be away from home. It’s even harder when home is far away.

Zuren and Josiah are from the small island of Trinidad. It is home to 1.27 million people and is 1,833 square miles—2.33 million people and 4,531 square miles less than the Twin Cities. But it is home.

“I am originally from the Dominican Republic, but my husband is from Trinidad,” said Zuren. “It is a beautiful country with kind people.”

And it is more than a hop, skip and a jump away from Rochester, Minn.

“My husband stayed in Trinidad with our two older daughters,” Zuren said. “It’s sad. But we need to be here for Josiah.”

Josiah was a happy, healthy baby. His mother described him as “normal as any other kid his age” and “never sick.” But all of that changed when he became ill with what the doctor in Trinidad classified as a severe cold and flu.

Josiah was given Vitamin C and an expectorant and prescribed antibiotics; the doctor said he would be better in one week. But soon the medication was gone and the illness was not. The doctor prescribed stronger medication, but he didn’t improve.

Shortly thereafter, Josiah developed mouth sores and swelling in his gums. The doctor classified it as a type of hepatitis infection. But treatments for his mouth did not work and it was worse every day. He started running fevers as well.

Josiah and Zuren (Photography by Fagan Studios)

Josiah was admitted to the private hospital in Trinidad for one week. He developed a stomach infection—perhaps caused by taking too many antibiotics. He was discharged, but his condition worsened at home.

“It was strange,” said Zuren. “We still didn’t know what was wrong, but we knew something was wrong…really wrong.”

Josiah and his family made the trek to the children’s hospital because it had a greater blood supply than the private hospital. He received blood tests, which revealed a high inflammation marker and other abnormalities. Additional tests did not reveal much information. Restless nights on the hospital floor in his quarantined room and long days trying to keep an active toddler on a hospital bed were trying times. And days turned into weeks.

The doctor told them it wasn’t looking good—he said he thought it was cancer.

The situation left Zuren and her husband with so many questions.

“What is wrong with Josiah?”

“Why does he have so many fevers?”

“Why aren’t they going away?”

There were no clues.

The fevers were controlled by ice water, cold cloths and medication, but would return stronger as soon as the medication wore off.

“I was so worried,” Zuren said. “He stopped eating and drinking—he was getting smaller every day. He cried until he fell asleep, but he couldn’t sleep well because he was in so much pain—we had to feed him PediaSure with a syringe to the back of his throat and use rags soaked with cold water to try and soothe the pain of the ulcers in his mouth.

“Nobody knew what was wrong.”

The children’s hospital said there was nothing else they could do, so Zuren and her husband traveled across the country to see more doctors. As energy, funds and hope were running low, one doctor said they needed to travel to the United States. He told them Josiah is neutropenic, but he didn’t have the tests, machines or medication he needed to treat it.

Neutropenia occurs when a person has too few neutrophils—the most abundant type of white blood cell—making those affected more susceptible to bacterial infections. It is very rare and can be life-threatening if it is not treated.

Josiah (Photography by Fagan Studios)

That’s how the family ended up at the Mayo Clinic in Rochester, Minn.

Their initial visit to Rochester lasted one month—their first experience with winter conditions—but they didn’t stay at the Ronald McDonald House of Rochester, Minnesota. Because they didn’t know it existed. Instead, the family rented a room in the building across the street from the House.

“I watched families come and go every day,” said Zuren. “I started dreaming—and praying—about staying at the House.”

Mayo Clinic prescribed a steroid and Josiah improved. He was a happy, healthy boy once again. Josiah and his family returned to Trinidad.

But soon the medication was gone and the illness was not..again. And he had the exact same symptoms.

Mayo Clinic told the family to return to Rochester for additional testing and treatment, but they had exhausted all of their resources. They didn’t have the money.

“I did not know how we would survive,” Zuren said. “We did not have any funds. But my husband said the Ronald McDonald House welcomes children and families who do not have money; they will help you.

“We called as soon as we were in Rochester.”

The family was on the waiting list for nearly two weeks before they received the call for a room. But it happened and it was more than they imagined.

“We walked outside every morning and saw the heart with LOVE & HOPE,” Zuren said. “The House gave us hope when we didn’t have any and gave us love when we were in need.

“It helped Josiah forget he was sick.”

The House recently cut the ribbon on its expansion—it is now a 70-room House with additional community spaces. And the House continues to welcome extended family members to stay and support their family in difficult times.

Josiah’s uncle (Glen), Josiah and Zuren (Photography by Fagan Studios)

“The expansion is so beautiful,” said Zuren. “There are so many families like us who need the House. Josiah’s dad cannot be here, so his uncle from New York is staying with us.

“It is stressful being in a new city and hospital; we couldn’t do it without him.”

And it’s not only the place, but the people. Volunteers make the House a home and provide families with comfort and care each and every day of the year.

“A smile may seem like something small, but to me a smile is like a fine diamond,” Zuren said. “They have beautiful hearts. And they care. It’s nice to know there are still people that care, even though they don’t know me or my family or my country very well. They care.

“This is a true friend family. Only a true friend will help you when you are in need.”

But Josiah’s journey is not over.

The additional tests revealed his body develops antibodies that fight his white blood cells; they die when they reach his blood. Doctors believe Josiah will need medication for the rest of his life. There is a slim chance he will not need medication as an adult, but only time will tell.

Zuren does not know if they will need to return to Rochester again—it’s unpredictable. They need to determine what Josiah needs to survive outside the hospital. But she is certain of one thing: Ronald McDonald House is their home.

“I can’t explain what happens inside the House,” said Zuren. “There is so much support, which is exactly what people need in these situations. There are so many parents who feel helpless and so many children who are in pain.

“I will never forget the Ronald McDonald House of Rochester—it will always have a special place in my heart. It is a place I will support for the rest of my life.”

Zuren and Josiah (Photography by Fagan Studios)

Enduring Eli

The definition of endure is to remain firm under suffering or misfortune without yielding. Another definition of endure is Eli.

“Eli amazes me,” said Samantha, Eli’s mom. “He has been so strong and brave.”

“Eli is resilient,” said Jason, Eli’s dad. “He handled it better than any of us.”

It was a typical day, as seven-year-old Eli and his parents prepared for youth baseball. But Eli opted to stay home—he wasn’t feeling well. His condition worsened and he experienced vomiting, neck pain and headaches. Following a visit to the emergency room and a consultation with the pediatrician, a CT scan confirmed their worst fear—a brain tumor.

Eli had immediate surgery to remove the softball-sized tumor. The tumor was believed to be slow-growing and not life-threatening—a one-time surgery and physical therapy. But three months later…it was back. And the outcome was bleak. Doctors believed the second surgery would be life-altering and difficult to make a full recovery.

Jason (dad), Eli, Samantha (mom) (Photography by Pretty Little Picture Photography)

Jason and Samantha pursued a second opinion from Mayo Clinic. The pediatric neurologist and oncologist needed the results from his biopsy to verify the type of brain tumor—because it is so incredibly rare.

Eli was diagnosed with a grade II atypical meningioma. The reason it is rare is because meningioma typically develops in adult women who are 50 years old or older and it is benign. Eli is a seven-year-old male and grade II is neither benign, nor malignant—it’s both. It has characteristics of both cells and can act both ways. It’s unpredictable.

And while it would require a second surgery, the neurosurgeon at Mayo Clinic was more optimistic about its outcome. As an expert in the field and one of the first to publish an academic paper on the specific condition, he was the man for the job.

Jason, Eli, Samantha (Photography by Pretty Little Picture Photography)

“The neurosurgeon confirmed it would require another surgery, but the outcome sounded for more positive,” Samantha said. “The road ahead was long and hard and filled with obstacles; Mayo altered our path.”

“The neurosurgeon is a miracle worker,” Jason said. “Eli was moving his limbs hours after surgery—hours after his brain was worked on. It was like nothing had changed.

“It was a miracle.”

And after the miracle surgery was performed by the neurosurgeon, Eli began proton beam radiation therapy. There are only 27 proton beam therapy centers in the United States and two are Mayo Clinic facilities—Rochester and Phoenix, Ariz.

As described by Samantha and Jason, typical radiation goes all the way through an area, regardless of vital organs, and radiates an entire, larger area. Proton beam radiation is specialized because the radiation is more precise. Doctors are able to control where the radiation goes and how far it goes, minimizing the effect on surrounding areas. The intensity can be increased or decreased more easily as well.

Jason, Eli, Samantha (Photography by Pretty Little Picture Photography)

It’s a lot less devastating in terms of development.

“Eli has very few side effects,” said Jason. “It’s like nothing changed. When you think about the tumor size and type…it’s amazing.

“The oncology, radiation, surgery—Mayo Clinic is top-notch, professional…perfect.”

In 2018, 26 families stayed at the Ronald McDonald House of Rochester, Minnesota for proton beam radiation therapy. Family stays for proton beam radiation often exceed the average stay, which was 22 nights in 2018.

Eli and his parents stayed at the House for 56 nights.

“We weren’t familiar with the Ronald McDonald House,” Samantha said. “You see it from the outside, but it’s not until you walk through the front doors that you realize everything the House has to offer. It’s such a special place.”

But when Eli and his parents arrived in Rochester and called the House…28 families were on the waiting list. It was 10 days before a room opened up.

Jason, Eli, Samantha (Photography by Pretty Little Picture Photography)

And for the next two months it was home.

“It was wonderful for Eli to be with other kids,” said Samantha. “He needed that interaction. And he made so many friends.”

“It’s not a normal situation, but in difficult moments, the House was home, his friends were family,” said Jason. “A rough day ends with happy memories.

“It’s therapy for parents as well. It’s good for all.”

Jason and Samantha also recognized the volunteers and staff, who “fill the House with love and will do anything for you.”

“It’s emotional,” Jason said. “The people here truly care and the volunteers are the cream of the crop. They give their time and energy to children and families who need it most.

“It’s amazing.”

And now…more families will experience the love. The Ronald McDonald House expansion—which increased the number of guest rooms from 42 to 70 and added multiple community spaces—celebrated its grand opening the week of May 13.

Jason, Eli, Samantha (Photography by Pretty Little Picture Photography)

“It’s so important,” Samantha said. “Traveling and staying for medical care is a major expense. The House makes a difference for families financially and is so much more than a room. It’s a community. And some families miss out on it.”

“It means more love will spread to more people,” Jason said.

Eli still faces challenges as he recovers from surgery, but all signs are pointing up. He will return for follow-up appointments and tests, but the family has one goal: return to normalcy, as much as possible.

And thanks to Mayo Clinic, the Ronald McDonald House and the Rochester community, it’s more than possible—it’s probable.

“The House served us so well,” said Jason. “It’s a hard spot in life, but it was not as much of a struggle because of the House. It’s something I will never forget.”

Strong in Every Sense of the Word

Emma (9), Kasey, Eden (4), Anna, Ethan (7) (Photography by Ally Frantz Photography)

The Strong family didn’t know what was wrong with Ethan, but they knew something was wrong.

“He wasn’t eating, his eyes were sunken in and he was always in pain from arthritis,” said Anna, his mother. “He is tough to summarize because he’s undiagnosed.”

The nature of Ethan’s medical condition led the family to Mayo Clinic, as he had gone as far as he could go with his hometown hospital.

“Mayo is doing studies on Ethan,” Anna said. “He is paving his own path and he wouldn’t be able to do it as safely at home. It’s remarkable.”

Ethan (Photography by Ally Frantz Photography)

Ethan was born with a rare autoinflammatory disease that is widely undiagnosed. He has battled sickness since he was born and relies on an eating tube for nutritional balance. But, as his last name says, he is strong.

“We have learned so much about Ethan, but he has also taught us so much,” said Anna. “He has fallen apart in grave circumstances and pulled it back together so many times. And he has done it with a smile on his face.

“He has such a loving and compassionate heart. He’s very unique.”

While the Strong family knew a lot about Mayo Clinic and its specialized care, they didn’t know much about the Ronald McDonald House of Rochester, Minnesota and its services. As far as Anna was aware…it was simply a hotel.

“We didn’t know what to expect,” Anna said. “But the House is amazing. And, as strange as it sounds, Ethan looks forward to coming to Rochester because of the House.”

The Strong family spent their entire first trip to Rochester and Mayo Clinic on the waiting list for the House. They spend as much time at the House as possible, even if they know they will not be able to get a room.

“Being on the waiting list is tough,” said Anna. “It’s even more challenging when you have a sick child. We do not go out and about because of his weaker immune system—we need a very clean environment.”

Ethan, Emma, Eden (Photography by Ally Frantz Photography)

Volunteers at the House clean all public spaces multiple times each day. That is only one of the many things volunteers do for the children and families staying at the House.

“It’s a relief for parents,” Anna said. “Everyone has the same goal—provide a safe and comfortable place for children. And the volunteers are so kind. They want to invest in you and your family and join you on your journey. They are so generous.”

And the House community is another aspect Anna values. Kids and parents going through similar situations; “it makes their time not as scary.”

But the waiting list often exceeds 20 families, resulting in many families arriving in Rochester and leaving without ever staying at the House.

The Love Tremendously Hope Exceedingly expansion project is attempting to address the growing need for the Ronald McDonald House of Rochester. When it is completed, it will be the largest Ronald McDonald House in the state of Minnesota with 70 guest rooms and additional community spaces. And the impact will be great.

“It’s incredible,” said Anna. “The toll it takes on a family when they don’t get to stay at the House is exponential. So many costs associated with staying elsewhere. It’s stressful.”

Anna also talked about House Dinners and Mailbox Stuffers as important day-brighteners for a child and family, providing normalcy in an abnormal situation.

Ethan has a bright future, but Rochester, Mayo Clinic and the Ronald McDonald House will always be a part of his life. The Strong family will visit multiple times monthly for treatment. And it’s a “forever thing.”

“There are many unknowns,” Anna said. “We don’t know if it is life-limiting; we haven’t been given an estimation. New research is coming out every day.

“The more we learn about Ethan, the more we can help him.”

And while more trips to Rochester and Mayo Clinic means more treatments, it also means more visits to the Ronald McDonald House, which has become Ethan’s home.

“He loves the House,” said Anna. “We truly enjoy our time at the House. It’s most definitely a home away from home.”

Strong Family (Photography by Ally Frantz Photography)

Bambenek named Hospitality Associate

Nancy Bambenek, Hospitality Associate

The Ronald McDonald House of Rochester, Minnesota, is pleased to announce that Nancy Bambenek will move into a new role as Hospitality Associate, effective May 6, 2019.

Hospitality Associate is a newly created position to support the growth of the House mission as it expands to serve 70 families each night. Hospitality with Heart is a core value of the House and Nancy will focus on this core value in her new position.

Nancy will work in concert with the Volunteer staff and Family Services staff to make families and visitors feel welcome. She will connect with the local community and share local entertainment and recreation options to families during their stay as well.

Nancy served the past 10 years as a House Manager and is excited to move into her new role as Hospitality Associate.

Please join me in congratulating and supporting Nancy as she moves into this new role at the House.

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 receives 2019 Remarkable Impact Grant

Infographic listing all Chapter recipients of Remarkable Impact Grants and program names

The Ronald McDonald House of Rochester, Minnesota (RMHMN), received a $50,000 Remarkable Impact Grant from Ronald McDonald House Charities (RMHC) through the generosity of AbbVie, which funded the grants, to expand its fresh and healthy food program.

The RMHMN program—which has a working title of Keepin’ It Fresh—will transform a current space at the Ronald McDonald House of Rochester into a co-op with fresh food, dairy and more for guest children and families. It will complement the current meal and food programs with perishable food items and is a long-term commitment to the health and well-being of House guests.

“We are excited to receive this grant to support a basic need for our guest families – access to protein and fresh produce – along with other perishable items families need to prepare nutritious meals while staying at the House,” RMHMN Executive Director Peggy Elliott said.

The Remarkable Impact Grants were awarded to Houses proposing programs that implement innovative ways to address the unmet needs of children and families and fit one of the following categories: wellness and nutrition, child enrichment, addressing the needs of unique populations, family support, before and after the Ronald McDonald House experience. The $25,000 or $50,000 grants were awarded to 29 RMHC Chapters across the United States as part of a $1,325,000 grant pool.

The food co-op qualified under the wellness and nutrition category. It will be completed as part of the four-month renovation to the existing House following the grand opening of its expansion project, which is set for the week of May 13.

The RMHMN previously received a $3.3 million grant on behalf of AbbVie in support of its expansion project, which was part of a $100 million donation from AbbVie to RMHC. As part of that donation, $2 million over the next two years has been allotted to support the Remarkable Impact Grants program.

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 about the expansion, please visit www.rmhmn.org.

Truth from Ruth

Ruth (Photography by Fagan Studios)

As Ruth was thinking about the past three months at the Ronald McDonald House of Rochester, Minnesota, a big smile came across her face and she said, “It’s hard to have a negative attitude when you’re surrounded by so much kindness, generosity and good…even when you’re here because you have cancer.”

Two years ago, Ruth suffered a traumatic brain injury that left her with memory loss. Doctors in her hometown did not have answers to her questions and did not specialize in brain injuries, so she journeyed to Mayo Clinic for the Pediatric Pain Rehabilitation Clinic.

After completing the clinic, Ruth returned home, but suddenly suffered from severe pain in her leg. Her doctors said it was either a bone infection…or a tumor. Because her hometown does not have a pediatric cancer unit, she had two options: University of Michigan Hospital or Mayo Clinic.

Because of her history at Mayo and because it “felt like home,” the family chose Mayo.

“When we arrived, doctors said it was most likely a tumor, but it still could have been a bone infection,” Ruth said. “We thought it would be benign and we would get it removed and go home. But it was cancerous.”

And so, two months after her clinic, Ruth was back at Mayo…for the long haul.

Angela (mom), Ruth, Dave (dad) (Photography by Fagan Studios)

Ruth’s parents, Dave and Angela, slept in her hospital room for the first few nights as she underwent vigorous tests and scans. The tests and scans revealed it would be a long stay, so the Mayo Clinic social worker recommended they call the Ronald McDonald House.

The family had some familiarity with the concept of a Ronald McDonald House, but didn’t know much about it or its services. Ruth was born with a cleft lip, so the family stayed in similar place when she was born, but it was not a Ronald McDonald House.

But they were 31st on the waiting list.

“We were on the waiting list for two weeks,” said Angela. “The House Manager called us the day before Thanksgiving with a room for our family. It was such a blessing.”

The timing was anything but coincidence. Ruth was staying at Saint Marys in the midst of chemotherapy and did not have an appetite…until Thanksgiving. She woke up Thursday with a craving for turkey, mashed potatoes, green beans and, of course, pumpkin pie.

And, as she was about to find out, she would have the Thanksgiving feast she longed for.

For more than 20 years, the Wilson family and friends have served Thanksgiving dinner to children and families staying at the House, families on the waiting list, and their extended families and friends as well.

Ruth (Photography by Fagan Studios)

“It was the biggest blessing ever,” Ruth said. “I was so worried that my family wouldn’t have a special Thanksgiving because of me.”

Her brothers were visiting from Michigan and Ohio and her uncle from Alaska and aunt from Minneapolis were in town as well. So, her dad walked to the Ronald McDonald House while the family spent time together at Saint Marys.

“I was exhausted,” Dave said. “I asked if I could have 10 meals to-go. They boxed it up quickly and sent me on my way. My family was able to have Thanksgiving dinner together in the hospital because of the Wilson family.”

“It is something we will never forget,” Angela said. “It was beautiful.”

“I was crying as I ate my pumpkin pie,” said Ruth. “It was so good and such a blessing. The meal was the reason we had a good Thanksgiving.”

The family stayed at the Ronald McDonald House for the next two weeks without Ruth, who was still inpatient as she received treatment. She heard about the House every day from her brothers, but it wasn’t the same as seeing it and experiencing it.

“Living at the House is a lot different than knowing what the House is or what it does,” Dave said. “I tell anyone who will listen how thankful I am for the House and how much of a difference it makes.”

One of the reasons the Ronald McDonald House of Rochester is able to make a difference is its volunteers. More than 2,000 people volunteer at the House every year, supporting children and families in many ways.

“House volunteers are interested in me and my life,” Ruth said. “They genuinely care about me. They are here because they want to be here.”

“Many volunteers are silent givers, doing things without being asked and without asking for anything in return,” said Angela. “That’s powerful.”

“It’s heartwarming to see people’s generosity,” Dave said. “People are crawling over each other to try and give and make a difference. And it really does make a difference.

Dave (dad), Ruth, Angela (mom) (Photography by Fagan Studios)

“We are pouring out our energy to help our child get better and, because of the House, we don’t have to worry about the other stuff.”

But Dave still finds the energy to give back. His piano playing can be heard in the dining area, filling the room with music for volunteers to enjoy while they work, serve and clean up and for families to take their minds off of their daily struggles.

“It is my way of saying thanks for the difference the volunteers are making for all of the families at the House,” said Dave.

It’s not only the volunteers that made Ruth and her parents feel at home. Both Dave and Angela talked about the community of families staying at the House and how they are on this journey together—joys and tears, smiles and fears.

Mayo Clinic is known for its world-renowned healthcare, while the Ronald McDonald House of Rochester is known for its hospitality. But the family found so much more during their two stays in Minnesota.

“Doctors are different at Mayo,” Ruth said. “They care about me—who I am. They are always thinking about me. It’s very personal.”

“The doctors, nurses and staff treat my daughter very well,” Dave said. “They work miracles medically, but they do so much more. They care for her.”

“I am more than a diagnosis or a treatment,” said Ruth.

And in the Ronald McDonald House the family found a home, which is currently expanding to serve more families beginning in spring 2019. Ruth described the House as a place with more opportunities and less isolation.

Ruth (Photography by Fagan Studios)

“It’s hard to imagine it,” Ruth said. “It’s not fun to be sick, but the House makes life so much better. If the House can help more people—if more people can experience it…”

“Nobody plans for their child to have a life-threatening sickness or an extended stay in a hospital,” Dave said. “Nobody budgets for weeks or months in a hotel. The House relieves that stress so you can focus on your child.

“More families need it.”

As far as Ruth is concerned, she finished her chemotherapy and is on the road to a full recovery. Her energy is still low and her leg is still weak, but she is headed home. She will come back every few months for a checkup, but the prognosis is promising.

“It’s a slow recovery from cancer and a slow recovery from chemo,” Angela said. “But I know she can do it.”

“And, no matter what happens, we can get through it because of what the House has done for us,” said Dave.

Ruth (Photography by Fagan Studios)

Another May Milestone: Ronald McDonald House Grand Opening Next Month

Ronald McDonald House of Rochester, Minnesota, expansion, as seen from a time-lapse camera on Second St. SW

The Ronald McDonald House of Rochester, Minnesota announced at Wednesday night’s Annual Meeting and Volunteer Appreciation Dinner that the grand opening for its expansion project will take place the week of May 13.

The week will include a public open house from 4-6 p.m. on Friday, May 17.

“The past year has been full of anticipation,” Executive Director Peggy Elliott said. “It’s very exciting. And it wouldn’t be possible without the overwhelming support of volunteers, donors and the entire Ronald McDonald House Community. We have so much to be grateful for.”

The grand opening will happen a little more than one year after groundbreaking, which was announced at the 2018 Annual Meeting and Volunteer Appreciation Dinner. It is also the result of more than a decade of planning and five years since the Board of Trustees voted to expand on the existing site.

“We have been fortunate to have outstanding Board and Committee leadership from the very beginning of this process,” said Elliott. “And our trusted construction partners, led by Knutson Construction, Egan Company and Harris Company, have made the entire building process an extremely positive experience.”

The expansion, which increases the number of rooms from 42 to 70, will also include a small indoor motor space, indoor and outdoor play areas and underground parking. All aspects are being completed with modern construction, creating welcoming and comfortable areas for children and families.

The expansion makes the Ronald McDonald House of Rochester the largest Ronald McDonald House in the state of Minnesota.

“It has been an incredible journey,” Elliott said. “We can’t wait to celebrate the grand opening with those who have made this possible and to begin welcoming more children and families.”

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 about the expansion, please visit www.rmhmn.org.

Organick named Volunteer Associate

Paige Organick, Volunteer Associate

The Ronald McDonald House of Rochester, Minnesota, is pleased to announce that Paige Organick has joined the staff as Volunteer Associate, effective April 1, 2019.

Volunteer Associate is a newly created position to support the growth of the RMHMN mission as the House expands to serve 28 more families each night. Volunteers truly make the House a home and Paige brings great enthusiasm, excitement and experience to this new role.

As Volunteer Associate, Paige will work closely with the Volunteer Director to recruit, train and celebrate the volunteers who provide care and support to the children and families the House serves. Paige will also work closely with Volunteer and Special Event Committees, as well as other staff, to grow the volunteer base in the coming years.

Originally from the Pacific Northwest, Paige relocated to Rochester in 2017. She graduated from Whitman College in Walla Walla, Wash., with a Bachelor of Arts in Sociology (Magna Cum Laude with honors). Paige most recently worked as a Clinical Research Assistant at Mayo Clinic and as a Wellness Coordinator at Madonna Living Community.

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.

CEO Madee

Matt (dad), Abbi, Madee and Sunee (mom) (Photography by Andrew Espino)

What would you do if your totally healthy, 10-year-old daughter woke up sick? What would you do if nobody believed she was sick?

“We couldn’t figure out what was wrong with her,” said Sunee, Madee’s mom. “Everyone called her a faker and said it was all in her head.”

“Everybody doubted me,” Madee said. “Family, friends—it was the talk of the town. Even doctors didn’t know what was wrong with me.”

Months later, someone suggested Madee may have POTS—Postural Orthostatic Tachycardia Syndrome. The family had never heard of POTS, so Sunee wrote a letter to the Mayo Clinic in Rochester asking for help.

“Madee lost 30 pounds in six months,” Sunee said. “She was sick for almost a year, but the scariest moment was when she had a seizure. We needed answers.”

The Hickman family journeyed 2,000 miles from California to Minnesota for answers. That’s when they found the Ronald McDonald House of Rochester, Minnesota.

“During that year, we spent everything we had—every dollar,” said Sunee. “When we received a room at the House, I could breathe again. My daughter was safe, she was happy and she was with friends. It’s all a parent wants for their child.”

And Madee was receiving the best health care in the world.

Madee (Photography by Andrew Espino)

After two weeks of tests and appointments with doctors at Mayo, she was diagnosed with POTS, Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome and Dysautonomia, among other things. Madee suffers from migraines, brain fog, joint pain, fatigue and more. Her body attacks whatever it wants to attack. And there’s no known cure.

But it’s more about having answers than the answer itself.

“Mayo was the starting point for where do we go from here,” Sunee said. “It was the diagnosis—this is what she has, this is what you can do and this is how you can do it.”

Sunee describes those two weeks as a very scary time—a time with many unknowns and even more challenges. But the Ronald McDonald House, she says, was their safe space.

“The House is our home,” Sunee said. “It’s where I learned that everything was going to be OK. When you have a sick child and you feel helpless, the House will be there for you.

“It brings tears to my eyes just thinking about it.”

But when the Hickman family arrived in Rochester, they were added to the waiting list for a room at the House. Sunee said she can’t put into words how it felt when she received a call for a room, but she is thrilled more families will share that feeling…soon.

The Ronald McDonald House of Rochester is in the midst of an expansion that will increase the number of guest rooms from 42 to 70 and add multiple community spaces. The expansion is expected to be completed in the spring.

“That’s amazing,” Sunee said. “The environment at the House is very different from a hotel. It’s awesome that kids and parents will know that they have a place to stay.”

Since Madee’s diagnosis nearly three years ago, the Hickman family has traveled around the country for treatment, staying at many Ronald McDonald Houses along the way. But the Ronald McDonald House of Rochester remains near and dear to their hearts.

“The House was the first one we stayed at and it’s still the best,” Madee said. “We still talk about it. It’s our home.”

“From the moment we walked into the House, we were welcomed with open arms and open hearts,” said Sunee. “The House made everything OK. We were only in Minnesota for a couple of weeks, but we are still in touch with friends we met at the House.

“The support at the House is something we will never forget.”

Abbi and Madee (Photography by Andrew Espino)

And that is one of the reasons that Madee and her sister, Abbi, founded Madee’s Dog Bakery. The girls wanted to help their parents with medical bills, donate to medical research and support the Ronald McDonald House of Rochester. But the bakery with a slogan of You lick it…You buy it! has become so much more. Madee is Chief Executive Officer, while Abbi is Chief Financial Officer.

“We have always been very involved with animals,” said Madee. “It just felt right.”

“Their first sale was at the local farmer’s market—they sold out,” Sunee said. “The girls recently submitted their audition tape for Shark Tank and we are in talks with some big companies. It’s all very exciting!”

And it all started at the Ronald McDonald House of Rochester.

Madee is stable, but every day is a different battle and she doesn’t know what tomorrow holds. But whenever she feels discouraged, she thinks of the Ronald McDonald House of Rochester, which became her home, saying that “the people inside are what makes it home.”

The family has not returned to Minnesota since their initial visit, but Sunee said Mayo Clinic and the Ronald McDonald House of Rochester will always be their home base, adding “if it wasn’t so cold, we might move to Minnesota.”

But, for now, the Hickman family’s heart is with the House that is 2,000 miles away.

Sunee (mom), Abbi, Madee and Matt (dad) (Photography by Andrew Espino)

Two Stays, One Story

Freking children (Photography by At A Glance Photography)

When people hear stories about families staying at the Ronald McDonald House of Rochester, Minnesota, they often say they can’t imagine what it would be like to go through something like that with their child.

Well, what if you had to go through it twice?

Bryce and Bobbi Jo Freking were thrilled and excited. It was 2013 and they were about to become parents for the first time. And it was a girl—a bonus in Bobbi Jo’s eyes. But those feelings were soon replaced by fear, worry, and uncertainty, as the new parents welcomed their beautiful daughter Aliyah into the world…seven weeks early.

“My water broke when I was only 33 weeks pregnant,” said Bobbi Jo. “The doctor gave me a steroid injection to help her lungs develop for delivery at 34 weeks, but once we arrived at the Mayo Clinic, she started to decelerate. Doctors said if she did it again, they would be forced to deliver her via C-section. And that’s exactly what happened.”

Faced with an unexpected stay in Rochester, Bobbi Jo and her husband were approached by a Mayo Clinic Social Worker who told them about the Ronald McDonald House.

“We didn’t expect her to come early, so it was a shock,” Bobbi Jo said. “They said we could stay at the Ronald McDonald House, but truthfully, we didn’t know much about it. What we found was a home-away-from-home, a support system, and a blessing; a true blessing.”

Their first stay at the House lasted only 17 days, but it was a good memory during a frightening time. As Bobbi Jo describes it, Aliyah deals with some hearing loss, but she has been very fortunate with her health since her premature birth. She is entering kindergarten this year.

Three years later, Aliyah became a big sister to Makaylee, who was born happy and healthy—emphasis on the healthy, per Bobbi Jo.

Two years after that, they once again added to their family. Unfortunately, healthy seemed like a distant memory.

Carson (Photography by At A Glance Photography)

Carson was born in Fairmont before being airlifted to Rochester. He was diagnosed with tracheal stenosis, a congenital defect that causes a narrowing of the windpipe. Doctors said they needed to open his chest to repair it, but they would have to wait for him to grow before they could perform the surgery. What followed were the longest six weeks of their lives.

“Carson’s journey into the world was very scary,” said Bobbi Jo. “Every expecting mother waits to hear their baby’s first cry, so when your baby is delivered and you don’t hear that and all you hear is that there is no respiratory effort, words cannot describe how you feel. But we were confident in the care we would receive at Mayo Clinic and confident in the hospitality we would receive at the Ronald McDonald House. It gave us comfort.”

Surgery was a success and Carson is on the road to recovery.

Bobbi Jo described how doctors cared for Carson like their own son and how her family was welcomed back to Mayo and the House with open arms. Aliyah and Makaylee were in and out, splitting time between visiting their brother in the hospital and being kids at the House. The impact on both Aliyah and Makaylee was immeasurable.

“The girls anticipated bringing their little brother home,” Bobbi Jo said. “When that didn’t happen, they were confused. The House, much like our home, was a place for them to be kids. It provided a great community and support system for our entire family…twice.”

Three weeks after Carson’s surgery, the Freking family checked out of the Ronald McDonald House of Rochester and journeyed home to yet another community of supporters in Sherburn and at St. John’s Lutheran Church.

Carson is growing and doing well. He will need to visit Mayo Clinic for frequent scopes to ensure that his trachea is growing as he grows. But it gives them comfort to know that the House will always be here.

“The House is an amazing place,” said Bobbi Jo. “We can’t express how thankful we are to the staff and volunteers. When you go through a situation like this, you realize that there’s a lot of really good people in the world—more than you know.”

Bobbi Jo wanted the opportunity to thank all of the Mayo Clinic doctors and nurses in Fairmont and Rochester, the congregation and pastors at St. John’s Lutheran Church in Sherburn and staff, volunteers and families at the Ronald McDonald House of Rochester. But most of all, Bobbi Jo wanted to thank a member of the NICU Flight Team…even though they have never met.

“Nurse Lori was so calm and confident,” Bobbi Jo said. “As a mother, it is your job to keep your baby safe, and when I was laying helpless on the operating table, I only heard her voice. I held on to her confidence. I knew that when I couldn’t be with my son, she would take care of him. I hope I can personally thank her one day, because I will never forget the sound of her voice.”

Bryce and Bobbi Jo also thanked their family, saying they would not have been able to get through these difficult times without them.

For two of their children, their memories start at the Ronald McDonald House of Rochester. Bobbi Jo talked about the House being there despite everything that was going on, saying sometimes the smallest things are the biggest blessings.

“And now…it’’s time to go home.”