Blake Violet FOXG1 Syndrome

In August of this year Lauren and Carl received life altering news when their then 10 month old daughter, Blake, was diagnosed with FOXG1 syndrome. FOXG1 syndrome is an extremely rare genetic mutation or deletion that affects approximately 900 children worldwide, with numbers rising. FOXG1 syndrome impacts brain development and causes severe physical and cognitive disabilities. This includes seizures, cortical vision impairment, feeding difficulties or reliance on feeding tube, extreme physical limitations, sleep and GI issues. The range of development for these kids is uncertain as it is a relatively new diagnoses and very few doctors are even aware of this condition. Although what the future holds for Blake is uncertain, we know we will do everything in our power to ensure the best possible care for her.

These funds will allow Lauren and Carl to have access to the best available options for Blake’s medical care, required equipment, and travel for treatment, as there are very few doctors in the country that are familiar or able to work with Blake and FOXG1 patients. We are also hoping to help Lauren and Carl to pay for the tremendous amount of doctors and specialists visits they currently have for Blake; twice weekly intensive PT, OT, and several regularly visited specialists.

Blake’s syndrome has no cure and requires 24 hour around the clock care. In the last few months Blake's therapists have seen her progress positively which is a huge step in staying ahead of this limiting condition. Blake has already undergone several comprehensive tests, including EEG, multiple MRI’s, as well as a surgery to help with her diagnosed sleep apnea.

Lauren and Carl will be planning a trip to Colorado, as it is the only location in the United States with a hospital that deals strictly with FOXG1 cases. They are also attending the first FOXG1 symposium in Florida in November to connect with other families with children afflicted with this horrible condition, and hear specialists from around the world speak on potential advancement in therapies that may help Blake in the future.

We will look to hold annual fundraisers as we learn more about what specific expenses will be over the coming years.

We sincerely appreciate any contribution and all prayers as we navigate this together as a family.

Please reach out directly to Erin with any questions; [email redacted]

For more information please visit www.foxg1research.org

Instagram: FOXG1 Research Foundation @foxg1research