Ian’s Story: 12 years and nearly 200 nights at the Ronald McDonald House

March 23rd, 2023 | Our Families

In 2011, Ian began having trouble with everyday things, like tying his shoes. He was often tired and weak. Eventually, local doctors referred him to the specialists at American Family Children’s Hospital in Madison for the underlying diagnosis, which took some time.

Initially, Ian’s mom Jan drove him to and from the hospital, a grueling six-hour trip, because she thought the Ronald McDonald House was only for critical care young patients and their families.

“Without the Ronald McDonald House, I don’t think we would have continued coming down here because we didn’t have answers for a long time,” said Jan. “We started coming in 2011 and Ian wasn’t diagnosed until 2017. It was frustrating but having the House to come to made it possible for us to continue seeking answers.”

Ian has high-functioning autism and a rare, genetic muscle disease. He is the only one out of over 65,000 people tested that has this particular gene variant that causes liver disease and muscle issues. He understands it is serious—when his muscles tire, they give out, and with the heart being a muscle he carefully monitors his symptoms.

“The House has been such a blessing in our lives,” says Jan. “Because Ian is autistic, we thought being at the House might be overly stimulating, but he adjusted quickly. He loves talking to everyone and knows them all by name. That has always given him a sense of belonging, just like home.”

Some of Ian’s great memories at the House are:

  • His favorite room is the video game room because he LOVES to play video games.
  • He and Jan always planned to arrive when they knew the therapy dogs would be visiting.
  • For a pumpkin carving event one Halloween, the friendly chaos was making Ian anxious. Until Ronald McDonald himself invited Ian to carve a pumpkin with him, just the two of them.
  • Another year, he came the day after his birthday and thought the birthday decorations in his room were left over, but no, they were just for Ian.
  • Ian’s appointments the year of the grand re-opening were scheduled the week before the event. So, he was really excited to be able to watch when the House live-streamed the event.
  • Ian and Jan have enjoyed a tradition of visiting Pet World Warehouse once during each stay.

Ian is getting ready to celebrate his 21st birthday next month and is now attending Northcentral Technical College for Human Services. Eventually, he would like to go into psychology and work with children with special needs. Ian wants to share his years of experience with individualized education programs (IEPs), doctors’ appointments, and counseling to help other kids that are going through what he has been through.

To learn more about the service offered to families at the Ronald McDonald House, visit www.rmhcmadison.org/what-we-do/ronald-mcdonald-house.