Tessa Marie FOXG1 Syndrome

Thank you for supporting Tessa and all the FOXG1 children out there.

At 11 months of age, Tessa was diagnosed with an extremely rare genetic disorder, FOXG1. FOXG1 Syndrome affects brain development and there are less than 1000 people diagnosed worldwide - most of which are children.

The severity of FOXG1 ranges; however, it may lead to the inability to sit, walk, talk, or use hands purposefully, vision impairment, epilepsy and seizures, and feeding issues.

We were completely devastated by the news, but it explained so much about Tessa’s developmental delays. Although smiley and cuddly, at 4 months old, Tessa couldn’t focus her eyes, hold her head up and start to do the developmental things you look for at that age. Tessa has a rigorous schedule of physical therapy, occupational therapy, feeding therapy, aquatic therapy, nutrition and speech. We also have a busy schedule filled with appointments with specialists around Buffalo and Rochester and see several providers at Oishei Children’s Hospital.

Tessa has also already undergone several comprehensive tests; including, x-rays, an MRI, EEG, an eye surgery to correct her strabismus and a sleep study to diagnose her sleep apnea.

There are intensive therapies to explore that could help Tessa immensely. The unfortunate thing is these therapies are not covered by insurance and are not provided here in Buffalo. Doing this for Tessa would involve Mom or Dad traveling with her to do hours of therapy for a week at a time.

Currently, there is no cure for FOXG1 but there is tremendous research underway to find a cure along with treatments for these amazing kids.

We are so hopeful that our prayers will be answered and that someday Tessa will defy all odds and that she will one day, walk and talk and do everything that she deserves to do. Tessa is a fighter and always has been. She works so hard in all her therapies, and she loves being with her family, laughing and smiling when the ones who love her are with her. We love her tremendously and are so thankful for her. We ask that you partner with us on this journey and are so thankful for your prayers and for your support!