Miles for Millie - Riding our way to a cure for Glut1DS

Millie was born a happy, healthy baby and at 4 months of age, she began with episodes of uncontrolled eye movements. Quickly falling behind in major developmental milestones, she began to present with significant ataxia, weakness, gross/fine motor impairments, and fell frequently. After a very long 3-year search with many, many specialists, Millie was diagnosed with Glut1 Deficiency Syndrome. 

Three weeks after diagnosis, Millie was admitted to Children's Hospital of Philadelphia (CHOP) for nearly a week as she began a strict medical ketogenic diet to shift her brain metabolism from glucose to ketones. After a rough start, but with a lot of inspiration from her older sister and prayers from many, our sweet little Millie began to improve and progress in all aspects of her life. Millie has now been on a strict keto diet through CHOP, where all food is weighed to the tenth of a gram, for over 10 years!   Millie is in the 7th grade and still needs quite a bit of repetition to learn and continues to benefit from therapies including speech, OT & PT, and wears a scoliosis back brace at night.

We are so thankful for the amazing, supportive people that we have met through this journey. We are so very grateful for family and friends from our church, school, and our community who have prayed, encouraged , helped, supported, and shown so much love.  We have also been gifted a loving Glut1 family and truly appreciate our amazing team at CHOP and Nemours. Millie dreams of when she no longer will need to be on such a restrictive diet. There are many challenges that come with the keto diet and with living with Glut1. Yet through this journey, the Blessings have far outweighed the challenges. Millie is truly a gift from God, as are the amazing people with Glut1 & their families, that we have been blessed to meet & share this journey.  We are inspired and driven to find a cure that promises a bright future for all who have Glut1 DS.  

We are so grateful to the Penn Medicine Orphan Disease Center who hosts this event to raise money for research in rare diseases! Please consider donating to our cause and being a part of transformative research. 100% of your donation will go towards Glut1DS research.