Mom of 2 Describes 'Purgatory' of Not Knowing How Long Her Boys Will Live: 'There Is No Roadmap' (Exclusive)

Mandie Moore's young sons have the same debilitating rare disease. In her own words, she explains how she dedicates every day to improving their quality of life

When Mandie Moore’s 8-year-old son Max complained that his legs hurt during short walks in spring 2020, she worried something was wrong. Soon he had trouble getting down the driveway of their Roswell, Georgia, home.

After two years of visiting doctors and traveling to hospitals around the country, he was diagnosed with ROHHAD syndrome, an ultra-rare disorder that affects the respiratory, nervous and endocrine systems, according to the the National Association for Rare Disorders. There are only about 200 cases reported in literature and clinically to date, says Max's pediatric pulmonologist Dr. Ajay Kasi at Children’s Healthcare of Atlanta.

ROHHAD stands for rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation. It causes extreme weight gain, difficulty breathing and other endocrine issues. It also reduces a child's life expectancy — 50 to 60% of cases end in early death. “It's an extremely rare disease which can be easily missed,” Kasi tells PEOPLE.

As Mandie and her husband Devon were coming to terms with Max's diagnosis, their younger son, Chance, began showing familiar symptoms of the syndrome. In 2023, the family learned he had the same disease, for which there is no treatment and no cure.

Mandie sat down with PEOPLE to share how she copes while striving to make memories for her boys, who are now 12 and 9. This is her story:

When Max was first diagnosed, I let out the biggest exhale ever. We finally had a name for it. But then the doctors said, "This isn't like cancer, where we can give you a guidebook of what's going to happen. There is no roadmap."

Because so few kids have ROHHAD, we don't know what our future will be or when the kids will decline. It could be in a day, a year, in five years. That's the hardest thing — living in this state of limbo. It's almost like purgatory. You allow yourself to build a little more hope for the future, but you have to be cautious and realistic. We try to live in the moment and face things as they come up.

I think the kids feel it. Chance has been asking me a lot of questions: What does heaven look like? What happens when you die? The kids are pretty intuitive about how their body feels.

Related: Why Mom Grieves Deaths of Her Kids with Rare Disorder Despite Them Being Alive: 'Is This Real Life?' (Exclusive)

Quality of life is the biggest thing for our family. Making decisions to do a medical intervention, like inserting a tracheostomy [a procedure to help air and oxygen reach the lungs by creating an opening into the windpipe from outside the neck] was really hard, especially because the boys had lived their whole lives — I hate the word "normal" — but in a more typical way. So to say that they struggled is an understatement. Max asked me about the trach, "Will I die without it?" I said, "Yes, you probably will."

Max had a cardiac arrest after his trach was put in two years ago. I remember being in the pediatric ICU watching them do CPR, I was holding his feet, and we were screaming, "Please don't go. Please stay." But we were planning his funeral. We didn't know the answers to questions like, “Would he want to be an organ donor?” Because he was 10, and who knows that at 10 years old? But it's conversations that we've since had with both of them.

There's a small Facebook community that I belong to for ROHHAD parents, about 200 members. We lost a girl who was 9 a week ago. We lost a 12-year-old two months ago. It's constant loss. But there's a 27-year-old guy in Texas, he still lives at home, he still has a nurse, he has a trach, he has pacemakers on his diaphragm — but he's made it to 27. But that's really the only outlier. The rest of the stories involve a lot of loss during the teenage years.

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Max has a great quality of life. He's very happy. That's all I want. I want him here and I want him happy. I don't really care what it looks like. Chance is getting there. Still, they both struggle with depression and anxiety at times. Grief shows up differently for everybody — I think I'm always going to be working through mine. But we're all in different stages and Chance is still having a harder time. He just did his Make-A-Wish trip, but it took several tries because he kept getting sicker.

For us, making memories has become really important. They're very intentional now. Whereas before they got sick, we took vacations, we did all the things that families do. Now, if Max wakes at 5 a.m. and says, "I want to go see the sunrise," we go outside — even if we want to stay in bed. Yesterday, he wanted to look at the cotton candy sky, so we did.

We give them as many experiences as we can. We went fishing in St. Augustine, Fla., and Chance caught a fish. I bought tickets to Ed Sheeran’s concert in May. We took the boys to Disney in December. If they say I want to do something, then we do it.

Related: Insurance Denies Newborn Twins Life-Saving Treatment for Fatal Genetic Disorder: 'Hard to Cope'

Right now, Max is doing well. It doesn't look good from other people's standards, but by our standards, he's good. But it changes so fast. As soon as you get one thing under control, there's something else, because ROHHAD affects the entire body. It’s constant whack-a-mole. You beat a problem down, you can exhale for a few minutes, and then something else pops up.

There’s this pressure to be super mom and to act like you're fine all the time, and you're not fine all the time. Nobody living like this is fine. I go to bed sad every night, and that's okay to say. I sit in the dark a lot and think about the things they will never get a chance to experience. And it's okay to have therapy and address your mental health and your family's mental health, because this isn't a normal life. Knowing there is an expiration date, but not knowing when it's going to be — that's not normal.

Max is happy with his life and I think that that's something that's given me perspective. He's been dealt a real crap hand, but to be able to find happiness in simple things, and to want to keep on living, and to keep on fighting, and keep on learning — he wants to be a marine biologist. Even though he's got a trach and can't go underwater, he has an innocence, and it's just lovely that he wants to go to college. He's got plans for himself.

Even with his struggles, Chance is our funny joke guy. He heals everything with humor. This ordeal is still a big change for him because he was super active, and super physical, and played sports and did all the things, and now it's a completely different life for him. But he just wants to make people smile. He wants to make people laugh. He, too, has plans. He hopes to be a police officer.

I had to give up my career as an ICU nurse practitioner. I stopped working when Max started getting sick. I quit right around the time of his cardiac arrest. If I hear "code blue", it brings back the trauma. It's not possible for me to do that anymore.

I’m in school studying to become a licensed clinical social worker. It's my way of healing. I want to be a therapist and work with kids and their families who have undergone medical trauma. One of the reasons I decided to go back to school is because I'm faced with the reality that one day, what has been my entire world, will no longer be.

I always tell people who are dealing with a rare disease: If you can't get out of bed for a day, let somebody else help you out. Give yourself grace — but always get back up.

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