Parents of 8-year-old born with rare disease share their family's journey

Family to go on Halloween cruise

By Sandra Ali - Anchor/Reporter, Kayla Clarke

A little girl was born with a rare disease for which there is no cure. Her parents are opening up and sharing their families long and emotional journey.

Adam and Jenn Stewart are the parents of Macy Stewart, 8, and the hurdles she's faced began right at birth.

"You go from this, you know, euphoric moment of having your first child and everything's perfect to, yeah, defense mode. Yeah, I mean, it's like, OK, what do we have to do? What's the next step to help things go the way they need to, in her favor," Adam said.

"They found out she was missing a kidney, she had hip dysplasia, she had a sacral dimple, she has torticollis. There were, like, all these little things that, kind of, when you put them together, they're like ' We think there's something else going on,'" Jenn said.

Doctors later discovered Macy has an extremely rare blood disorder known as Fanconi anemia. According to Jenn it's a DNA repair disease.

"The body cannot repair all the DNA damage that's caused from everyday life. From chemicals, radiation, just being alive. The body can't handle it."

Macy's parents decided they would focus on making sure Macy had a happy childhood.

"I remember we sat down and had this, like, really candid conversation. We were just like, OK, we don't know how long she's going to be here. We don't know what's going to happen, but we want to give her the best life we can while she's here," Jenn said. "Her hospital room, she decorated in all Halloween even though she was in the hospital in May and June. It was all Halloween and then the two days before she was discharged she wanted to throw a big Halloween party for the doctors and nurses."

"So I ordered a bunch of stuff and we all had costumes on, she had candy, she had this big Halloween archway and she dressed up like a fairy. And I remember, I have this picture of her sitting on her hospital bed with her little bowl of candy and her big Halloween archway. And all the doctors and nurses would come in and trick-or-treat," Jenn said.

Jenn and Adam are focused on making memories with Macy and now the little girl who's favorite hobby is dressing up is headed on a Halloween cruise thanks to Make-a-Wish.

Last year Make-a-Wish Michigan granted more than 450 wishes for boys and girls like Macy, but overall there were more than 700 children in the program waiting for wishes.

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