Addy and Norah Weith are seven-year old twin sisters who love to color, read and play with their dog, Murphy. Norah loves Addy’s snuggles. Addy likes to watch YouTube with Norah and eat cheese puffs. In addition to sharing their love for one another, each has unique medical challenges. Sometimes, hospital stays separate the twins from each other and from their parents, Lisa and Eric. But, the family is held together through the support of an equally unique team of neighbors, therapists, church members, and teachers.
When the twins were nine months old, Lisa became very concerned after Addy stopped eating. Addy also developed a tremor and was not meeting regular milestones, like sitting up or crawling. After seeing numerous physicians and getting no answers. Lisa’s instincts told her to push further to find answers for Addy. The couple met with a genetics specialist who, after mitochondrial DNA testing, diagnosed Addy as having MELAS with a Leigh syndrome overlap mutation.
Norah does not have mitochondrial disease. However, Addy’s frequent hospital admissions and being away from her sister and her parents resulted in her being diagnosed with an anxiety disorder and ADHD. “She really worries when Addy gets sick”, Lisa said. “She’s only seven, but she has to deal with a lot of worries that a seven-year-old shouldn’t have to deal with.”
When the Weiths moved to Grand Rapids, Michigan, they found an entire community of caregivers who offer support, help and, most of all, love. They also know that UMDF is part of that team by providing support, education and informational resources they need – especially now.
When you Give the Gift of Energy this holiday season, you join the care team that supports patient families like the Weiths. Your gift helps UMDF advocate for the needs of our entire patient community. When dedicated donors like you Give the Gift of Energy, you are letting patient families know that they are not alone on their journey with mitochondrial disease.
Because both of their children are medically compromised, Lisa and Eric make every day count by creating as many memories as possible for Addy and Norah. “Even if we do the little things like reading a new book from the library, or maybe Addy played a new game, when we’re going to bed, Addy will just say….’this is the best day ever’.” Lisa said.
Give the Gift of Energy this holiday season and help make it the “best day ever” for all patient families.