Ethan: More Than Meets the Eye

Photography by Artistic Expressions

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

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

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

But they quickly learned Ethan was “extremely lucky.”

 Photography by Artistic Expressions

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

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

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

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

 Photography by Artistic Expressions

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

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

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

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

 Photography by Artistic Expressions

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

And the House proximity to Saint Marys Campus is important.

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

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

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

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

 Photography by Artistic Expressions

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

“The House is invaluable.”

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

And he loves helping others.

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

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

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

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

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

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

 Photography by Artistic Expressions
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