After two sons diagnosed with rare disease, mom finds purpose in helping others

Both Max and Chance Moore, 12 and 9 respectively, have ROHHAD, a rare, terminal disease, and their family is focused on making special memories together. Courtesy of Mandie Moore

Credit: Courtesy of Mandie Moore

Credit: Courtesy of Mandie Moore

Both Max and Chance Moore, 12 and 9 respectively, have ROHHAD, a rare, terminal disease, and their family is focused on making special memories together. Courtesy of Mandie Moore

While Mandie Moore is focused on navigating a terrifying diagnosis for not one but both of her sons, she is also thinking about her future and how she can serve other families through their own heartbreaking challenges.

Life was wonderfully typical until about four years ago. Moore and Devin, her husband of nearly 16 years, were living in Roswell, raising their two sons Max and Chance. They were active in their neighborhood, where the kids had play dates, climbed trees, went to preschool, then elementary school and rode the bus home each day.

Both boys were diagnosed with autism at young ages.

“Neither of them presented in the stereotypical way,” said Moore, 42. “They were both verbal, super social, and would make eye contact, but Max presented with aggression and irritability, while Chance had cognitive delays.”

Max’s behavioral issues intensified as he got older and the Moores decided to move from their three-story home to a ranch in February 2020 for safety concerns. They were oblivious to how necessary a single level home would be in mere months.

The pandemic hit right after their move. With an abundance of time at home, the family often took walks down the quiet streets of their new neighborhood.

“Max was fine during those walks until after a month or two, then he’d have to sit down because his legs were killing him, he was overheated, sweaty and exhausted,” said Moore. “He had no endurance anymore. We knew that wasn’t good.”

The Moores took Max to a neurologist who did genetic testing and discovered he may be a carrier of muscular dystrophy. He was diagnosed with epilepsy in the spring and by fall he was vomiting often, gaining weight rapidly, and craving salty food at night.

Around 1 a.m. on New Year’s Day of 2021, Max hemorrhaged and vomited excessive amounts of blood before seizing and losing consciousness in Moore’s arms. She was about to start CPR on her child just as EMS arrived.

Max went straight into surgery upon arriving at the hospital. He had two bleeding peptic ulcers where his stomach meets his esophagus. Doctors said the ulcers were not typical for children. Max stayed in the PICU (pediatric intensive care unit) for a month, his first hospital stay ever, and during that time was diagnosed with ROHHAD, a rare diagnosis that stands for a combination of symptoms: rapid-onset obesity with hypothalamic dysregulation, hypoventilation, and autonomic dysregulation. The disorder affects 1 in 58 million children. Since it is so rare and difficult to diagnose, many kids die due to respiratory or cardiac issues before being diagnosed.

While there is no cure for the diagnosis and it is life limiting, experimental treatments like IVIG infusions, intravenous medicine that mimics human antibodies, have helped Max. At 12 years old he has lost much of the 100 pounds he gained, has restored his energy levels greatly and doesn’t require the motorized wheelchair he once relied on. Like most kids with ROHHAD, Max did require a tracheostomy to create an airway to help him breathe.

Soon after Max’s diagnosis was confirmed with finality in 2022, his younger brother Chance, 7 at the time, started to show symptoms of heat intolerance and weight gain. By June 2023, he was also diagnosed with ROHHAD and had a subsequent tracheostomy.

“We were very angry,” said Moore. “I think what bothered us most was Chance saw it coming. It was really hard with Max, every bit of it, but to have your other child see his brother dying and know the same is coming for him — it’s like standing in front of a train, knowing it’s going to hit you.”

Fortunately, the boys are able to receive comprehensive care at Children’s Healthcare of Atlanta, unlike many ROHHAD patients who have to travel state to state to see all the necessary specialists.

Moore, who was a full-time nurse practitioner, left her job to care for her boys full time.

“We had so many hospital stays, it was just too hard, and it was also so difficult because I worked in the ICU and every time I heard “code,” the trauma I’d endured with my boys came rushing back,” said Moore. “It was just too much.”

Now that she has adjusted to the new rhythm in her life, Moore has decided to pursue another master’s degree, this one in licensed clinical social work. She’d like to work with families and kids who have experienced medical trauma, or possibly in hospice or palliative care.

“I would really love to give back to Children’s, because they’re the reason my kids are still here,” said Moore. “Max nearly died multiple times. We had even started planning his funeral. The reason I got through it was because of the palliative care team and the social worker. The way they kept me afloat and held my hand so I could be there for Max, so I could be the mother I wanted to be, wow. I just don’t think mentally I could’ve made it without them.”

Moore is a member of a ROHHAD support group on Facebook that has around 200 members. The information shared among parents is immensely helpful, but also very heavy.

“I see posts about people losing their children and after each child passed, I wondered what am I going to do when my whole world goes away,” said Moore, her voice shaking. “I will never survive both of my children not being here if I don’t have a purpose. Helping others is my opportunity to find purpose, to find a sliver of positive amid something so horrible. I want to help others stay afloat.”

Moore will be in school for three semesters. As she prepares for her next professional venture, she’s savoring every moment with her sons and living with intention.

“We all want our kids to grow up and have the brightest future, but any future can change in a second,” said Moore. “Nothing is guaranteed for anyone, not just terminal kids. Live every day to make memories. Bank them, store them, don’t take them for granted. Those memories will stay with us forever.”