In this episode of Voices of MED13L, we return to our Growing Up with MED13L series with life at age 34. Host Inon Shampanier, a MED13L parent and board member, talks with Maria Remillard about her daughter Katie.
Maria describes Katie’s life today: a social young woman who loves music, being around people, and getting out in her community with a steady group of friends. Katie is non-verbal and uses a wheelchair, and Maria shares how she communicates through expression, sound, and eye gaze, and how well her family and caregivers understand her.
Maria also walks through their long road to a diagnosis. For years Katie was understood to have a mitochondrial disease, and the MED13L answer did not come until she was 23, when she was only the tenth person diagnosed in the United States. Drawing on the decade she spent running a nonprofit for mitochondrial disease, Maria offers hard-won perspective for other families: be your child’s advocate, lean on your community, look after your own health as a caregiver, and plan ahead with a special needs trust.
Growing Up with MED13L follows our kids through the ages and stages that shape who they become. The Voices of MED13L is a podcast from the MED13L Foundation. Learn more at med13l.org.
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