At a glance
Lauren is an energetic 8-year-old who loves soccer, art, dancing, animals, and playing with her sister and two brothers in Lake St. Louis, Missouri. Her parents, Sara and Brian, say she works harder than anyone they know, which has helped her make excellent progress.
Onset and Diagnosis
At the beginning of the 2018 school year, Lauren and her siblings all had a cold. Soon after Lauren complained of neck pain. A couple of days later, Lauren woke up and could not move her right arm. That morning her arm didn’t improve, and she began seeing double. Her pediatrician sent Lauren’s family to the ER, where Lauren was hospitalized. Following an MRI and a spinal tap, the ER doctors diagnosed Lauren with AFM.
In the Hospital
Lauren began treatment with steroids and intravenous immune globulin (IVIG). Lauren soon experienced weakness in her neck, and the doctors moved her to the pediatric intensive care unit (PICU). When Lauren started having trouble breathing, the doctors intubated her. As her symptoms progressed, Lauren couldn't hold up her head and lost movement in her left arm as well.
She began plasmapheresis, physical therapy, and occupational therapy. She was in the hospital for 5 weeks. When she left the hospital, she could breathe on her own, hold up her head, and move her left arm but she still had a long road to recovery.
Making Progress
Lauren began outpatient therapy at a pediatric bridge hospital in St. Louis. Initially, she did 3 hours of physical therapy and 2 hours of occupational therapy every week. In April of 2019, Lauren had nerve transfer surgery, which has helped her regain more use of her right arm. Toward the end of 2019, Lauren did an intensive outpatient program, going to physical therapy and occupational therapy for 2 hours every day for 2 weeks.
Since then, she's continued with an hour of therapy every week. In addition to the therapy, Lauren adapted to some other big changes, including switching to writing with her left hand, and giving up her top bunk.
Today
During the COVID-19 pandemic, Lauren has continued doing therapy exercises on her own and has been doing video calls with a family member who is an occupational therapist. She also sees a counselor every week as her family believes mental health is as important as physical ability. Lauren plays soccer, takes art classes, and does archery through a sports program for children with disabilities. She continues to make new gains, and she’s very happy to now be back in the top bunk!
Advice to Parents Facing AFM
"Connect with other parents who are coping with AFM. When we were at the hospital, and everything was so overwhelming, talking to another parent individually was very helpful. After we were out of the hospital, we learned a lot from a Facebook group for families living with AFM. That's where we got information about nerve transfers, different kinds of therapy, and different equipment people had at home."
– Sara, Laren's mother
"There can always be improvement. We're almost 2 years out, and Lauren still can't move her arm up above her shoulder, but she is doing so much better than when we left the hospital. We tell people, you don't want to give up. You want to keep doing the therapy. When you're in the moment, you have to focus, and go day by day. But know that things can get better and make sure you're doing everything you can to give your child a chance."
– Brian, Lauren's Father