On June 14th, 2021, my friends received some crushing news that has changed their lives forever. Their sweet 11 year old daughter, Annabelle, was diagnosed with the devastating and life-altering genetic disease of Friedreich’s Ataxia. This disease is a rare form of muscular dystrophy that limits muscle movement and growth, severely affecting heart and lung function. Most children Annabelle’s age who are diagnosed with this disease end up in a wheelchair within two years. There is no cure for Friedrech’s Ataxia, and treatments are minimal at best. Heartbreaking for any family to hear, doctors have told them, “The most important thing is to make the most out of the time you have.”
Annabelle has already been experiencing heart issues. On April 6th, 2021, Annabelle was rushed by ambulance from Duluth, MN to Children’s Hospital in Minneapolis. She spent six days at Children’s Hospital hooked up to heart monitoring machines, and will continue to be monitored for heart disease for the rest of her life. She has difficulty breathing, tires easily, is unstable on her feet and falls frequently. Since there is no cure for this disease, Annabelle’s family has needed to take her to see specialists at several different hospitals, including multiple trips to Children’s Hospital in Minneapolis. They are hoping to be involved in clinical trials which will require lots of travel and missed work for her parents. Annabelle’s mother, Elaine, is the attendance secretary at Superior High School. While Elaine’s job does provide sick time, it does not even begin to cover the time off that will be required for Annabelle’s frequent appointments or a possible medical leave. Annabelle’s father, Dean, owns their own cab company (Yellow Door), and when he misses work he loses a day of pay. Anyone who knows this family, surely has witnessed their generosity and support for others in the community. Elaine has spent countless hours volunteering through PTA, Girl Scouts, and numerous other charitable organizations. Dean has a gruff exterior hiding his kind heart, but through his cab company he has helped countless people who were in a bind with a ride at no charge. Yellow Door currently works with the Human Development Center (HDC), CHUM and the woman’s shelter providing transportation.
Annabelle is a fun spirited girl who is taking this disease in stride. Please consider contributing to her GoFundMe to alleviate some of the financial burdens that this grim disease has created. Donations will help with medical expenses, travel costs related to out of town appointments, lost wages and other needs that will help the family adjust to the new normal of having a sick child at home. Prayers and shares are also greatly appreciated! THANK YOU in advance for your support to help Annabelle live her best life.