Parker's Racers

Lynn Bellomi / 2023 Race to a Cure

Support those with FoxG1 and the amazing researchers racing to a cure!

  • $3,000

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  • $3,000

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About Parker's Racers

My son Parker was born with FoxG1 Syndrome, though his diagnosis didn't come until he was 5 years old. At 7 months old he started having myoclonic spasms, a form of epilepsy. Parker was 8 months old when we were seen by a neurologist. Alone in the appointment with a small baby, the neurologist told me I'd likely never know what Parker had, he may not live long so I should just take him home and love him. Unsatisfied with that answer it started a journey through many tests, appointments and travel to three children's hospitals. At the third hospital, LPCH-Stanford, we participated in a study and received his FoxG1 Syndrome. Though happy to have an answer I learned at that time only a few hundred were known to have FoxG1. With little information available, we went forth with the attitude of no limits and let Parker try to reach his maximum potential! Now age 12, Parker's movement disorder causes his hands and legs to constantly move, he has myoclonic spasms and tonic-clonic seizures. He requires assistance to sit and cannot walk or feed himself. Parker can say a few words but is mostly nonverbal. Since being diagnosed Parker's journey was told in The Genome Odyssey by author Dr. Euan Angus Ashley. We have participated in research hoping to help future generations of FoxG1 children. I never thought that we would see the possibility of life-changing therapies in our lifetime! The FOXG1 Research Foundation has two key genetic therapy programs that they are working to bring to clinical trials to develop treatments for children. Every dollar raised brings the FoxG1 Research Foundation closer to our $200k goal. Please join Parker's team and donate as we race to a cure!

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