Sabrina and Reiff knew early on that there were issues with Maleea and Malachi’s health, but multiple doctor visits and tests never yielded clear answers for their symptoms. Despite these unknown difficulties, Malachi and Maleea grew up as fairly active kids. Malachi played peewee football in Mill Creek, and although tremors and issues with balance required him to pull back from the sport in high school, he still wanted to be a part of the Archbishop Murphy team. “He decided to be the mascot,” shares his mother, Sabrina. “His happy, friendly energy made him the best mascot they’d ever had, and he did it for all four years.” Maleea has always been a cheerleader and is still part of the Archbishop Murphy squad in her senior year. “She has always been a quiet, kind type of person,” Sabrina says of her daughter. “This disease is scary for her, but she has always had really close friends who support her. It’s hard being an 18-year-old girl in high school and being told you now need a wheelchair.”

They discovered the disease when Malachi was 18. He was riding his bike to school one day when he was hit by a car. As he recovered from a concussion, his tremors worsened and his neurologist ordered a panel of genetic testing. The results finally led them to Batten’s, a rare, terminal neurological disease caused by an inherited genetic mutation. There was a 25% chance of one of the other two Castillote children having the same disease. Azriel, their middle child, was unaffected, but Maleea’s tests confirmed that she had Batten’s, too. 

“It is effectively all of the neurological diseases you can think of wrapped up into one,” their father Reiff explains. Batten’s continually destroys the brain and neural cells, leaving side effects similar to dementia, seizures, and the eventual loss of abilities to see, walk, and speak. While there is currently no available cure, there is an enzyme treatment that aims to preserve the brain as much as possible.

Once the diagnoses were in, the family had to mobilize. The Castillotes headed for Orange County Children’s Hospital in California where the nearest specialized team was waiting for them. “Both kids had their first brain surgery on the same day,” shares Sabrina. “These infusions have to be done every nine days, so we flew back and forth between Seattle and California for about six months.” 

Maleea and Malachi were the first rare siblings to be diagnosed with the fatal disease at Seattle Children’s Hospital. “Malachi is technically the oldest child in the USA that is still walking, talking, seeing, and living,” shares Sabrina. This puts him and his sister Maleea in a unique position to be able to describe their symptoms and side effects. “We invited the Seattle Children’s team to California to learn about our kids and their treatment,” shares Sabrina. Thanks to the Castillotes, Batten’s treatment is now available in Seattle, and doctors have been able to gain valuable information that will help future children battling the disease as well.  

As their journey progresses, Sabrina and Reiff continue to work hard for their children, transitioning into full-time caregivers as Malachi and Maleea’s abilities continue to decline. “With Batten’s, you never know when an ability will change or be lost,” shares Sabrina. “It’s hard to anticipate, and they will never get that ability back.” As parents, Sabrina and Reiff have to roll with the punches and adapt to these changes quickly. “It is a constant state of fight or flight, and a constant state of grief, but we pull ourselves out of that in order to care for them,” Sabrina shares. “We want to continue to help them have the best quality of life.” Sabrina and Reiff hope that by sharing their journey, their experience can help other families battling Batten’s and other rare diseases as they navigate the medical system, treatments, and personal battles that come with it all. 

Maleea, now 18, is working on finishing her senior year, even though school looks much different for her now. “Fatigue from the infusions means shorter days at school,” shares Sabrina. They are thankful for the community that came together to get a wheelchair donated to Maleea, which will allow her more freedom and less fatigue. 

The family hopes to be able to provide a wheelchair for Malachi soon as well. Malachi, now 22, has grown into an artist and entrepreneur. Despite his tremors and the onset of blindness, he has developed his own graffiti style art using spray paint. He donated his first piece for a Seattle Children’s Hospital fundraiser which raised $5000, and he had his first solo art show in September of 2022.

To read more about the Castillote family’s journey and stay up to date on ways to help support them, visit their CaringBridge site at caringbridge.org/visit/castillotefamily.