Help Tessa Marie Fight FOXG1 Syndrome

Thank you for all of your support for our daughter Tessa Marie. March 13, 2025, marks two years of receiving her official diagnosis of FOXG1 syndrome. This diagnosis was not only devastating but also life-changing for Tessa and our entire family.

FOXG1 syndrome is a rare genetic disorder that roughly 1200 people worldwide have been diagnosed with - most of which are children.

FOXG1 is a neurological condition that affects brain development. With FOXG1 syndrome, the severity ranges; however, it may lead to the inability to walk, talk, low muscle tone, involuntary muscle movement, vision impairment, epilepsy and seizures, digestion and feeding issues, and sleep issues.

At not even three years of age, Tessa has undergone immense testing, diagnostics, and hospital visits both in and out of state. This includes; x-rays, an MRI, EEG, an eye surgery to correct her strabismus and a sleep study to diagnosis her sleep apnea.

In addition to that, Tessa receives eleven therapies a week with providers that work with her on OT, PT, Feeding, Speech, Nutrition, Special Ed and Aquatic therapy. All of her therapies have helped her gain so much strength, yet we want more for her and we believe she can do more.

There are intensive therapies that we have explored for Tessa that help her immensely. These therapies are very expensive, not covered by insurance, are out of state and the country, and require Mom and Dad to travel to with her.

Tessa works hard and is a fighter. We want to continue to explore these intensives that are so beneficial to her. We travel to SMILE Therapy in Burlington, Ontario Canada. Each time that we go, it is a hardship and a financial burden but it is worth it. As a result, we see noticeable and observable changes in her movement, responsiveness, and fine and gross motor skills. Tessa has made such great gains and continues to get stronger and stronger.

Tessa loves being with her family, cuddling with her mommy, laughing with her daddy, listening to music, and hearing her sibling's constant noise throughout the house. We love her tremendously and thank God every day for her. We are so blessed.

First and foremost, we ask that you pray for Tessa and our family. Please pray that she will continue to grow and develop and meet these milestones, that she may walk, and talk someday, and for strength for our family, as her care is intense and constant. We thank you for your support!