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 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.”
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.”