We are the Myers family. Aaron, Krystle, Kayden, and Amelia. We live in a suburb outside of Chicago, near Rockford IL.

Amelia lived a healthy normal life, until she was 9 years old. Amelia began having difficulty in school, writing, toe walking, and then a drunk walk. It took over a year to get diagnosed despite seeing a few specialists in IL and had a lot of various testing. Amelia’s school nurse suggested going out of state and Amelia was finally diagnosed with an MRI at the Children’s hospital of Madison,WI in May 2022. We attended Rare disease week in Washington D.C. 2023 and met with our state senators and House representatives and helped testify and advocate for Bill SB 67 to add MLD to newborn screening in IL. The bill was approved by the Senate and House and was approved by the governor in July of 2023. Our family is passionate about advocating and spreading awareness about MLD and newborn screening.