SOMA Living October 2022

THE TORREY FAMILY

Photography by Jamie Meier

For 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 community.”

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