Rare Disease Day: Mom’s Son Has Multiple Rare Diseases; Appreciates Ronald McDonald House

Boy in wheelchair sits next to statues of polar bears.

By Rick Shepherd

Laurie Aguilera-Rivera and her son Enrique, both of England, Arkansas had never stayed at a Ronald McDonald House. Though they were familiar with the House in Little Rock, she and Enrique, never stayed at that House in Little Rock because only families of children in the ICU or burn unit can stay at that house and there’s a five-day limit. Enrique was originally diagnosed with a rare neuro disease at Nationwide Children’s Hospital after that local hospital was unable to determine the cause of his symptoms that he began to develop at five years old. As is often the case of children with rare diseases, the smaller local hospital told his parents that they couldn’t help him. Often, local hospitals will refer families to Nationwide Children’s Hospital for the expert care their child needs. But in this case, the local doctors weren’t even sure where Enrique should go for help. So, in this case, Laurie says she and her husband found other families on the internet with children who had the same rare disease as their son and asked them where to take their son. The only answer given was always Nationwide Children’s Hospital. Laurie says it’s because NCH is the only hospital in the U.S. with experts who are able to help children with this particular disease.

“I thought it was terrible that we had to travel an hour away for medical treatment. But 14 hours?!” That’s how Laurie answered the question of what she thought when she found that they would have to start traveling to Columbus, Ohio to help their son. “But you have to do what you have to do. If nobody else can treat him. His health was declining rapidly and he’s on the verge of losing his eyesight.”

Laurie says she was so grateful that the neuro team at NCH told her about our Ronald McDonald House when they made their first trip to the hospital six years ago.

“It was more than I expected because I was thinking maybe just like a hotel with a small room with a bathroom. But you come and you have all the playrooms. He loves the Lego Room. And he LOVES the gift shop,” Our Ronald McDonald House often gives toys and other items to families staying with us, but Enrique loves to shop, and Laurie says she likes to take him shopping there knowing every dollar goes to keeping our House open. “He also loves the music room,” Laurie added. At this point, Enrique who has been quiet during the interview interjects, “The music room?! I like that one!” Lauire points out that he can get lost in time when in the Lego room, spending one or two hours at a time.

As for herself, Laurie says she loves that she can do laundry anytime at the House. “We stay here a couple months at a time. We don’t have to bring two months’ worth of clothes or go out and find laundromats!” She also appreciates having the smaller, family kitchens because she likes to cook and needs to cook special recipes because of Enriques special diet.

When asked if anyone else in the family has stayed, Laurie says her husband used to come until his own health declined. That’s why, she says, the House staff and volunteers are the biggest help. Lydia, Enrique’s sister has also stayed at the House when the family first started coming to Columbus. “It was like a playhouse to her! She loved it!”

Laurie points out that it’s just her and Enrique that make the 14-hour drive now and being able to relax in such a restful place keeps her going on such a long road trip – especially, she says, when its white knuckle driving at times like through the ice storm that they had to endure for most the trip last time.

The two of them will, unfortunately, have to be coming back more and more often, Lauire says, because Enrique’s health has been declining and they now go to other clinics at NCH too, including Oncology. A clinic she says she hopes won’t tell them that they will have to delay Enrique’s next surgery.

I asked Lauire if she had any final words for the community as we wrapped up our conversation, and she said she wanted to thank all of the family and friends who contribute to Enrique’s ongoing pop-tab drive, pointing out that folks bring tabs from as far away as Georgia to him and they bring all the sandwich bags of tabs collected to our Ronald McDonald House for each trip. She says they usually arrive at the House in the dark, so they’re happy to know the tabs help pay the electric bill and keep the lights on for their arrival.