Maxwell's FOXG1 Syndrome Fundraiser

Our son Maxwell will celebrate his 2nd birthday in October 2016. When Max was born, we knew he was different. He had low muscle tone, and at 7 months was diagnosed with microcephaly (small head size, slow growth of brain), delayed myleination, and hypoplasia of his corpus callosum. A year passed, and after numerous tests, a full exome sequencing test diagnosed Maxwell with a rare genetic disorder called FOXG1 Syndrome.

There are only 200-250 people in the world diagnosed with FOXG1. Max is the only child in West Virginia that we know of who has this diagnosis. FOXG1 Syndrome has caused Maxwell to have global developmental delays, microcephaly, a cortical visual impairment, sensory processing disorder, difficulty eating, and low muscle tone. He will need therapy, adaptive devices, assistive technology, and 24/7 care his entire life.

Our family has been so inspired by Maxwell's courage, bravery, and persistence that we want to help educate others about FOXG1, assist in fundraising for researching treatments, and also raise money for Maxwell's care/mobility devices.

Thank you all for joining us on Maxwell's journey. Your love and support mean everything to us. Please follow our story by clicking on the link to our blog.