or most people, adrenoleukodystrophy (ALD), is a mystery. At best, it’s a reminder of the academy award winning movie, “Lorenzo’s Oil” starring Susan Sarandon, Nick Nolte, and Peter Ustinov. For the Torrey family, ALD is very real (ALD is a rare, inherited metabolic disorder that damages the membrane/myelin sheath that covers nerve cells in the brain and spinal cord).
Fifteen years ago, the Torreys heard the word Adrenoleukodystrophy for the first time and their lives changed. Jack Torrey (now 24), was diagnosed with ALD. With the benefit of a stem cell transplant and ongoing therapies, Jack survived, and has learned to live his life to the fullest. While Jack is dependent on his family and caregivers for daily functioning, his mother, Jesse, is quick to point out, “His smile makes caring for him pretty easy.” In
many ways, Jack is the “heart” of the Torrey family.
Jack’s younger sister, Anna (22), might be the “head” of the Torrey family. A stellar student and athlete at Columbia High School, Anna moved on to Johns Hopkins where she graduated pre-med with Honors. Most recently, she completed her MCAT exams and is living in Baltimore for a gap year while she applies to medical school.
Anna and Jack are close. Jesse explains, “Anna was only six years old when Jack got sick and that’s really what paved the way to this next chapter. She is interested in genetics and reproductive endocrinology to help people with genetic disorders, like ALD.” She added, “Jack is so proud of his little sister. Whether it was watching her play lacrosse in high school or watching her graduate college. Jack is her biggest silent fan”.
But Anna isn’t the only student in the family. Recently, Jesse completed a master’s degree in counseling to work with other special needs families. Dan shared, “When Jack was diagnosed with ALD, there really weren’t any resources available specifically for ALD. Even 15 years ago, there was very little awareness or understanding in the medical community.” He added, “She ended up publishing a book, ‘Smiles and Duct Tape’ to
help other families.” Dan beamed, “She helps other families and advocates for the ALD
With the entire family lending time to care for Jack, Dan’s job changed too. He explained, “For many years I worked in traditional finance and then moved to crypto for a company called FalconX. It’s an institutional crypto brokerage firm.”
The Torrey’s are big advocates for SOMA Public Schools. Jesse stated, “Anna was always an exceptional student and the district had plenty of interesting opportunities to challenge her. Jack started school at The Marshall School but following his diagnosis he needed more support. The district was integral to finding appropriate
out-of-district schools that provided Jack with what he needed.” Jack now attends The Universal Institute for adults with special needs. Like Jack, the clientele is fully dependent, but the program offers life enrichment with field trips and other appropriate activities.
The SOMA community is an integral part of the Torrey’s story. 25 years ago, Dan and Jesse were living in Brooklyn before relocating to SOMA. Dan was working on Wall Street, while Jesse was a photographer and art teacher. Jesse explained,
“I grew up in Summit NJ, and didn’t really want to move there. We were looking for a more ‘crunchy’ town. The diversity and beautiful little village suited us perfectly.” Dan quickly added, “We feel extremely fortunate that we raised our kids in the Maplewood/South Orange community. With a child as complicated and special as Jack, the community is so accepting. Everyone greets each other with a warm smile and people in SOMA are always eager to help when needed. When Jack was sick, people brought us meals for over a year. A local swim team raised $5K to help with expenses. Neighbors walked dogs and helped with Anna.” Jesse continued, “It’s a wonderful community; so open and loving, holding neighbors up when they need it most. We love it here so much that we are in our third home in the community!”
I concluded the interview by asking Dan and Jesse how they maintain life balance. Jesse stated, “One day at a time. We’ve learned over the years how to adapt; we have learned how to adjust things so we can continue doing the things we love. We travel, we socialize, we spend time with people we love. Our best advice to other families is to learn how to adapt. Life may not look how you expected it to, but it can still be wonderful .”
Jamie Meier is the photographer and writer of our family cover stories! She is the face and camera behind Live Love Lens Photography® and Live Love Maplewood®. Click below for her website and social media.