Rafe’s Story

“You see the looks on the faces of the parents coming in. We see the kids scared, and we're able to talk to them and let him know everything's going to be okay. It’s just really walking side by side them with them in their journey,” Bacon says.

Hibben says their lives changed when her son was just two years old.

“Up until that point, he was pretty healthy, very happy, easygoing, the best sleeper, and then things started shifting.” Her son’s stomach became paralyzed. He started having pain and then developed major seizures. “Unfortunately, everything's kind of snowballed into a chronic condition and a chronic need to stay in the hospital quite frequently for many, many different reasons.”

Rafe has a rare genetic mutation called IQSEC2. Hibben’s son is one of only around a thousand kids in the world who have it. According to the National Institutes of Health, IQSEC2 causes seizures, intellectual disability and sometimes other physical, neurological or psychiatric symptoms.

“Rafe is at the very severe end of the spectrum, in terms of medical complexity,” Hibben says. He has spent more of his young life inside a hospital versus out of it. Because his condition is so rare, he and has family have traveled to five different states to try to address his medical needs.

Rafe is non-ambulatory and cannot speak. “I think as he gets older, it will probably get harder, tougher,” Hibben says. “Unfortunately, as the years have gone by, his condition has gotten more and more complex, more serious and harder to manage.” 

Raising a child with so many medical issues has been incredibly difficult, and like any mother, Hibben just wants to take it all away. “I wish I could take this on for him, but I can't. So, I do the best I can to advocate for him to live the best life he possibly can even though it's in the hospital, quite often,” she says.

Also helping to give Rafe the best life possible: the Child Life team at UNM Children’s Hospital. From decorating his room for the holidays, celebrating his birthday to being the light on so many dark days, Hibben says it’s made all the difference.

“These people have become like family. These people know Rafe, inside and out just like we do. So many of them are indispensable. Living in the hospital with a child can be very lonely, very scary. And I really do want to emphasize how thankful I am for the people who have shown up: his nurses, his doctors, his specialists, to make this life as acceptable, personable and livable as possible.”

Bacon says it is an honor for her and her team to support children like Rafe and his family.

“We just feel privileged to be with them, and we're always in awe of not only the patients but their families and their resiliency.”