Sarah & Adam Martin of Talladega, Alabama are often on the road with their two young sons. They travel around the country so Colt can ride youth motocross competitions. But the trip to Columbus is never very easy. The family has been coming to Nationwide Children’s hospital since October of last year so Colt’s younger brother, Mason, can get the care he needs. Describing how it felt as she and her husband looked at what lay ahead for Mason, Sarah explained, “It is a scary and hopeless feeling to not understand what is happening to your child. Especially when they are so young and cannot just tell you exactly what/how they are feeling.”
Mason was diagnosed with Chiari Malformation and Tethered Spinal Cord at Children’s of Alabama. Chiari Malformation is a condition in which brain tissue extends out of your skull and pushes on your spinal cord. Tethered spinal cord syndrome is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. The Martins were referred to Nationwide Children’s hospital during their journey to find out Mason’s diagnosis. Sarah said, “We had been trying to find a doctor to help Mason for two and a half years before we were referred to Dr. Leonard. Mason had de-tether surgery in October 2019 and decompression surgery for his Chiari in January 2020.”
When planning for the first surgery, the Martins found out about the Ronald McDonald House. “It was great having somewhere to stay to close to the hospital. They make you feel at home and Mason loves the playrooms,” Sarah said with delight. “We were there during Christmas last year and he got to see Santa. The House helps Mason feel more comfortable.”
Mason’s parents believe staying at the House helps Mason decompress after a stressful day seeing doctors. Referring to the trips to Columbus, Sarah said, “He was happy to be there, just not so much the hospital. There were wonderful people that would cook for lunch and dinner was so great. After Mason’s second surgery, he wouldn’t eat. I remember there was a restaurant that came in and cooked different pastas. Mason would not stop eating and they were so sweet to him.”
Mason likes to get his bicycle out of the van full of motorbikes and equipment that the family sometimes brings when coming to Columbus and, fortunately, the House has a big back yard for riding around. “I think Mason loves dirt bikes more than his brother, ” Sarah joked. “Mason loves motorcycles more than anyone. I feel like anywhere we go Mason has to have his motorcycles and is always racing.” It seems Mason really looks up to his older brother. “My older son, Colt, got his first motorcycle at three-and-a-half years old and started racing when he was five. In 2018, he won the Loretta Lynn National Championship. Colt is 9 years old now and we are heading back to the National Championship in about 4 weeks for the fourth year in a row.” Sarah pointed out that the motocross community is like a huge, extended family for Mason and the family has made many friends through the sport. “Motocross is a family atmosphere and there is nothing like it,” Sarah exclaimed. “Mason likes to yell at his brother and tell him to go faster or jump higher. He also loves helping his dad work on the bikes. All he wants to play with is dirt bike toys, be at the dirt bike track, and ride.” When it comes to taking Mason on the road for races, Sarah says there’s no place he would rather be. “Mason has a high pain tolerance and he fights through the pain most days to be able to play with his dirt bike toys and watch his brother race. Mason will get down a lot at the races and we travel in a van with a bed so it allows Mason to lay down during the day.”
Some parents might be scared watching their young child riding a motocross bike on a challenging course. But, Sarah said her real apprehension centers on the course Mason’s ailments currently have him on and for any surprises that may come up surrounding those challenges. “It is scary not to know what Mason’s future holds. Mason still suffers from pain in his back, bladder and bowel issues. We are unsure what the future holds but we will make the best of it for Mason.”
Though the trip to Columbus may not be as fun as a trip to another race track for Mason, Sarah says she and Adam have a simple message for volunteers & supporters of the House. “Thank you for all you do. When a family is going through a scary time in their lives, the Ronald McDonald House is a light in the darkness. It is a wonderful atmosphere for the kids and we could not be more thankful for it helping Mason through the tough times. Mason has a lot of anxiety with doctors and hospital. The House makes his experience a lot better.”
Click here to see the viral video of Mason next to his brother at a starting gate that’s been seen eight million times. Safe travels, Mason and family.
The following article is based on answers from an e-mail interview translated from Polish to English.
Back in his home country of Poland, Marcel Samol wasn’t given very good odds of surviving a brain tumor that’s known as one of the most aggressive in children. Embryonal tumors with multilayered rosettes, otherwise known at ETMR, occurs in children aged 4 and under, mostly in children under 2 and is fatal 75% of the time. “I will also add the fact that in Poland they confused Marcel’s diagnosis,” says Karolina Brenk, Marcel’s mother. She and Marcel’s father, Artur, then began looking for help abroad. Karolina says, “Professor Jonathan Finlay from Nationwide Children’s Hospital came to the rescue,” adding, “He gave us a light in the tunnel and thanks to him we also knew the correct diagnosis. After 2 months since Marcel became ill we were already in the USA and Marcel started treatment.” Money was the biggest obstacle for Marcel’s parents, needing $850,000 for Marcel’s treatment at NCH. But they were able to get tremendous support from their community back home. “We managed to collect the entire amount in just 13 days and on January 19 we flew out for a new life.”
Karolina says they learned about our Ronald McDonald House from another family from Poland who had stayed previously. The family was relieved they could stay right next to the hospital and wouldn’t have to have another huge expense of having to pay for a place while staying in Columbus. As Karolina describes it, staying at our House did take some getting used to. A few things were different from back in Poland. “First of all, we were surprised that there are no quilts with bedding, only bedspreads.”
Marcel and his family have been staying with us for about 4 months and will need to stay for a few more months. Karolina says Artur is also very happy that they’ve found a place here. She says, “during this hard period, we have a piece of “home””. She writes that the family really enjoys the family kitchens the most pointing out, with a smiley face, “We can cook our Polish dishes here because we don’t like American food.” Karolina says another favorite spot at the House has been the big back yard, which has been very important because the family doesn’t have the ability to leave the hospital campus during the pandemic.
As so many families often do, Marcel celebrated a very special day while staying at the House recently. He turned one year old at the beginning of May and our family activities manager, Abigail Brumme, was determined to help the family make sure Marcel had a traditional Polish first birthday. It was truly a momentous occasion with a cake donated by local bakery, The End Dessert Company, sparkling juice, and presents. Karolina says this will be a very special memory of their time staying at our House. “It was magical and beautiful! But above all, Marcel was smiling all the time and that was our goal!” Due to the need for
When asked what she would like to tell our community of staff, volunteers, & donors if she was in a room with everyone, she said, “I would like them to know that there are people here who are open-hearted to help families in this difficult time. Certainly, thank each one individually and hug each for how wonderful the work they do. Not everyone is able to sacrifice themselves and give their heart to help people. It is a beautiful gift and certainly each of them will be rewarded in their lives for the beautiful deeds they do. I would like to tell them that they are great! Great and thanks to people like them – we parents can peacefully fight for the lives of our children, for which we will be grateful for the rest of our lives. 🙂 ”
As for the future prognosis for Marcel, Karolina says, “Prospects for the future, we hope that they are the best because Marcel is a brave boy and treatment has gone very well, but with cancer you can never be sure. However, we live with good hope and we stick to it.” She ends her note to us with, “Pozdrawiam serdecznie!” or Best wishes!
We certainly wish the best for Marcel, Karolina, & Artur too.
Two frequent guests to our Ronald McDonald House have become close friends over the years as they’ve crossed paths at our House several times. Ashton Zari and Christin Love are always having fundraisers to give back to their “home away from home”. Now they’re working together to raise money for the House with a virtual art auction. Click here to see the story by our own Red Shoe Society member, Matt Barnes on NBC4.
To check out the art pieces these two have created along with Xander Love (no relation to Christin), click here before the end of the month when the auction ends.
Eight-year-old Bianca of Monroe County, West Virginia loves to dance. Her mother, Cortney White, says Bianca is especially fond of ballet, jazz and hip-hop. When Bianca was diagnosed with Leukemia last October, Cortney says the news came as a sudden and complete shock. “I never realized the importance and significance of the small things that I took for granted until they were stripped from our life in one afternoon.” Even now, you might not realize the active gymnast and artist is in a battle against cancer. Cortney says of her daughter, “She has fought this horrible disease with beauty and grace. I feel so fortunate and blessed to spend every day with the happiest and the most positive person I know. She is always smiling and laughing. She brightens my days.”
Bianca and her family started on this medical journey when Bianca got her diagnosis at CAMC Women & Children’s Hospital in Charleston, West Virginia. Cortney says, “Immediately, I knew that I had to find her the best possible treatment and facility. I started researching and Nationwide Children’s Hospital was ranked #4 in the nation for children’s cancer hospitals.” Cortney says they felt fortunate to have such a world-renowned hospital in a neighboring state. She arranged for Bianca to be transferred the very next day after she was diagnosed.
Cortney says when they arrived in Columbus, she immediately felt better. “I knew this was where we needed to be.” It was from a hospital social worker that Cortney found out about the Ronald McDonald House. She says she wasn’t familiar with RMHC, but when she learned about the House across the street from the hospital, she was relieved. “Hearing that Bianca and I would have a place to call home during treatment gave me hope,” she exclaimed. “I had no idea such facilities existed. It still seems unreal to me that the generosity of volunteers and donors have made it possible for my family to stay close next door to the hospital, while receiving treatment.”
Though Bianca’s grandmother, her father, and brother have all stayed at the House at different times with Bianca since they arrived last fall, the coronavirus forced the House to make limitations on the number of guests who could stay beginning in March. Cortney admits it’s been hard leaving Bianca’s six-year-old brother Brandon back on the family’s farm for weeks on end. She knows it’s also been a challenge for Bianca to be away from her home, family, and friends for great lengths of time. But, she adds, “The Ronald McDonald House has given us the opportunity to establish a home away from home. We Facetime, text, and Bianca loves SnapChat to communicate with her family and close friends daily.” Cortney appreciates the measures the House has taken to keep everyone safe during these unprecedented times. “Everyone is wearing a mask and performing social distancing to keep everyone safe during this pandemic. The Ronald McDonald House is following the same protocol as Nationwide Children’s Hospital, which makes me feel like I’m bringing my daughter into a safe environment.”
Cortney believes staying at the House has had an impact on Bianca’s treatment too. “Staying here, at the Ronald McDonald House, has helped my daughter receive the best of care. She goes to the hospital Monday thru Friday for infusion chemotherapy.” “Without the House,” Cortney says, “…our journey, I’m sure, would have been a lot different. I am forever grateful and thankful that we are here, and my daughter is receiving the best care possible. It is truly been a blessing.”
Though she and her daughter are here on a health journey that’s been tough, Cortney points out that her family is grateful for having enjoyed some special, pleasant memories while staying at the House. “During Christmas, Bianca enjoyed seeing the Grinch and Cindy Lou Who!” Cortney continues, “We love seeing the different decorations on display during the holidays… The atmosphere is one of joy and kindness here… it’s a beautiful thing to witness.”
What’s next? Cortney answers, “Our dream is for Bianca to be completely healed.” Cortney explains, “She looks forward to her last day of chemo when she can ring the bell and celebrate her victory. We look forward to the day that she can go back to living the life she once did. I want to see her in school with her classmates, take her to dance class and gymnastics. I want her to sleep in her bed at night, exchange Valentines with her friends, participate in the Christmas play at church, and enjoy her animals on the farm.”
Ronald McDonald House Charities of Central Ohio is committed to the health and well being of our community. Our team is working diligently to address concerns with the spread of COVID-19 (Coronavirus). In an effort to maintain the safety of our community, we have suspended non-essential volunteer groups. In addition, many meal groups have cancelled or rescheduled for a later date. As you know, the Ronald McDonald House and Ronald McDonald Family Room are completely dependent upon volunteerism to operate.
In these challenging times, we are fortunate to have many people asking how they can help us at RMHC. If you are interested in helping us provide meals to guests of the Ronald McDonald House, please consider making a donation. To learn more about supporting the meal program, called Team Cuisine, please email Katherine.Becker@RMHC-CentralOhio.org. To make a financial donation to support our operations, please visit rmhc-centralohio.org/donation-form/.
In addition, RMHC of Central Ohio has postponed our Volunteer Appreciation Dinner and Handbag HULLABALOO! Dublin in compliance with Governor DeWine’s Executive Order. We will be working with our event committees to announce the rescheduled dates for those events as they become available.
Please know that we sincerely appreciate the support of our community, and look forward to the day that we can open our doors once again to volunteer groups.
RMHC of Central Ohio
Thinking of the best way to describe what the Ronald McDonald House provides families in one word can only be summed up as “relief”. Our family first became familiar with the Ronald McDonald House Charities when our twins, Grayson and Annalise, were born prematurely at 33 weeks exactly. We live in Michigan and the twins were born at Toledo Children’s Hospital in Toledo, Ohio. At the time of their unexpected birth we also had a 2-year-old daughter. One of the NICU nurses brought in an application for their Ronald McDonald House as a place for my husband and our oldest daughter, Annabella, to stay. As parents juggling the roller coaster of the NICU along with trying to maintain a sense of normal for our oldest daughter we were grateful to have this bright colorful place to just be with her. Little did we know at the time how big a part the Ronald McDonald House Charities would be in our lives.
Grayson and Annalise had a rocky first year of life with multiple hospital stays in our local children’s hospital; there was a constant back and forth between the twins of high fevers over 105 for 6-10 days, rashes, joint pain, inflammation, headaches, and poor growth. We had exhausted our local resources and our pediatrician recommended going to Nationwide Children’s Hospital for a 2nd opinion and the ability to see more extensive specialist. Our first appointment was shortly after the twins 1st birthday with Oncology/Hematology and they began to put the puzzle pieces together. Unlike most with their disease, a rare Autoinflammatory disease, we were lucky that our twins were diagnosed early at 18 months and began a lifelong treatment to minimize damage. We were travelling from Michigan to Columbus, Ohio sometimes weekly that first year as everything was sorted out. The trip for us is usually around 7 hours round trip which with small children especially when they were “flaring” is miserable for all involved. Our specialist tried to coordinate the twin’s appointments as much as possible but there were still times when we had a test on Monday and then see a specialist on a Wednesday or times when only one was admitted.
It is during these moments when we are trying to figure out how to juggle whether we should drive back and forth, get a hotel, what to do with the “healthy” siblings, that the comfort and relief of the Ronald McDonald House is indescribable. Instead of Nationwide Hospital being a place our children dread they love going “home” to see their family at the House. The house has taken the burden of worrying about mounting travel expenses off of our shoulders, the worry about packing enough to entertain two toddlers, where to go to eat, and how I am going to do laundry is erased because the house has a solution for all of that. Our family has made countless memories within the walls of the house over the past 2 years. This past trip in December was one where both twins have been very stable for the past month; seeing them climb the tree house, run around the playroom, and fined joy in the Christmas decorations of a place that truly feels as if it has some magic is something we will always cherish. As we watched them just enjoy being 3 year old’s my husband and I were discussing those many times that they didn’t have the energy to play, they physically couldn’t climb the tree house because it was too painful, and we spent hours rocking them in our room because of pain.
As parents of chronically ill children we cannot say thank you enough for all that you provide. You may not see it but the relief that this house brings to families is innumerable. In a world where our children are fighting a battle that nobody should endure you provide those much needed moments of hope, the laughter amongst tears, sweet I love you between families, and those moments where mom and dad can breath a sigh of relief and know that they are in a place where it is ok to take a deep breath and only worry about the most important thing, their family, because their family in the house will take care of everything else.
Thank you so much to everybody who tirelessly supports the Ronald McDonald Charities. Your support brings hope to families like ours.
This is a story that means so much to us here at the Ronald McDonald House this season. Knox Vehrs is home for the holidays after 423 days at Nationwide Children’s Hospital and his family stayed with us for that first year and two months of his life. Recently, his family returned from their home in Wyandot County to drop off a check for $8,400. The donation was for their stay and to pay it forward for future families needing to stay here. But what makes this story even sweeter is how his 9-yr-old cousin Paige (pictured), a member of #4h in Wyandott County, sold her calf and donated the proceeds to Ronald McDonald House of Central Ohio! The community was so moved and inspired by her act of generosity, they added to the donation for a total of $4,577❗️That’s nearly $13,000 from the two families and the community altogether. Thank you. Merry Christmas & Happy New Year to both families and your supporters!
For 16-year-old Laci, her medical journey began with back pain that wouldn’t go away. Then an ankle that didn’t appear broken, but she still felt the pain of a badly damaged ankle. Doctors back home in Huntington, West Virginia recommended Nationwide Children’s Hospital in Columbus to find the cause of her pain. This would become a tough journey in more ways than one. It turned out Laci had a connective tissue disorder and a dysfunction of her central nervous system. With both diagnoses, bumps in the road during the trip to Columbus literally caused pain to flare up along the way. What’s worse, is Laci’s family would find themselves making the trip for weekly appointments. Click the image below to hear more from Laci’s mom, Crystal, and how thankful they are for the Ronald McDonald House.
Megan & Matt Kilan of Norfolk, Nebraska suddenly found themselves making the trip to Columbus where one of their twin baby boys would be undergoing treatment for lung issues in November of last year. As the couple come upon the one year mark of being guests at the Columbus Ronald McDonald House, they took a moment to reflect on their experience staying in the House in a video interview. You can watch the interview by clicking the image below.
“Thank you Ronald McDonald House of Central Ohio for supporting my family and my GrandBoo in the #ronaldmcdonaldfamilyroom at OhioHealth Riverside NICU. Being in the NICU is a challenging time for all families. Some families spend months in the unit caring for their newborns, but to experience a place where families can go and relax and be taken care of, was truly a blessing. Thank you for being there for families and my family! My granddaughter JB thanks you too! Greatly appreciated! ❤”
This was the kind comment left by Cassandra White-Graves in response to the above picture of her and her granddaughter, Alaya Anderson, taken last month in the Ronald McDonald Family Room at OhioHealth Riverside Methodist Hospital. It was posted to our Facebook page after we captured the moment of the two taking advantage of the play area in the room while awaiting the arrival of Alaya’s sister. Our Ronald McDonald Family Room at the hospital is the first RMFR in Central Ohio. It has only been open a few years and thousands of family members have already made use of the room to relax and recharge in between visits to the NICU or pediatric patient’s room.
One thing that visitors to the RMFR often say in feedback about using the room, is how grateful they are for the staff member who welcomed their family into this restful space. Yet, there aren’t staff members keeping the room available 9 a.m. to 9 p.m. every day. The fine folks that keep the room open and attend to the needs of families using it, are actually always volunteers! Recently, a web page was set up as a way for folks to show support for the RMFR and the volunteers who make sure the room is clean and whom provide an ear of empathy and sympathy. If you would like to contribute to this volunteer-based fundraiser, just click here.