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.”

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)