When you’re a parent you worry, it just comes with the territory and everyone knows it, but an even worse feeling is knowing your child is struggling, hurting or disabled and not being able to fix it or find cure that would make it all better.

For Nathan and Mallorie Stump that feeling became a reality after the birth of their first daughter Maylee.

Shortly after her first birthday, Maylee tested positive for a rare genetic mutation called Rhett Syndrome.

Rett Syndrome is a progressive neurodevelopment disorder that almost exclusively affects females. National Organization of Rare Disorders says that “between 6 and 18 months of age, affected girls may enter a period of developmental stagnation. Loss of eye contact and a lack of interest in play or games may also occur.”

First-time-mom, Mallorie told abc12, “You always talk about, ‘Hey, I want to get married, I want to have kids, I want to do this, I want to do that, but you never talk about what if they’re born with a disability or a disease. You just don’t talk about it.”

The Lapeer, MI natives said they started to notice that something just wasn’t right with their daughter. Mallorie expressed, “Certain things that she used to always do, it was hard to get her to do them.” She continued, “I would always tell myself it was okay, and then a few days later I would be like, okay this is not normal.”

Maylee’s father Nathan said when the diagnosis came in and he got the call from his wife saying “It’s okay. It’s not the end of the world.” The first thing he did when he got off the phone with her was look it up and think “this is the end of the world.”

Any way you look at it, the now family of four is making the best of it and choosing to focus on the present. Maylee is doing well and continuing to make progress, but the fight has just begun.

With help from their friends and family Nathan and Mallory continue to work towards a cure through fundraisers and supporting others with Rhett Syndrome.

In recent months, The Stump family welcomed another baby girl into their family — to have a sibling with Rhett Syndrome is even more rare than the disease itself and baby Mollie tested negative.

The mother of two noted, “She’s exactly what our family needed — what Maylee needed. She’ll look over at Mollie, she’ll go and do her thing, then come back and you’ll hear her whisper ‘baby.’ So, it’s amazing to see that sister bond and that’s what we wanted.”

This story was originally reported by Abc12