Finn, the Son of a New Jersey State Police Detective Sergeant Jeff Botti, was born on February 1, 2020. In the first year of his life, he underwent open heart surgery for coarctation of the aorta and VSD, as well as a second heart surgery on his aorta several months later. On January 11, 2021, Finn was diagnosed with a rare genetic disorder called FOXG1 Syndrome that affects brain development. 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, feeding issues, etc.
We were crushed – as a parent, you never want to hear that your child has a disease that is not treatable. We mourned for the life we hoped he would have…running around with his brothers, Jack and Asher, going to college, getting married, having children, etc. But then we found the FOXG1 Research Foundation (foxg1research.org) and it gave us hope. This foundation was started by parents of children with FOXG1 Syndrome, just like us, and in just five years, “has assembled a top-tier Scientific Team to develop translation science including gene therapies; antisense therapies, small molecule therapies, and emerging therapies that could help correct the FOXG1 mutation.” We believe in this foundation and have actively joined the fight to find a cure for all children and adults with FOXG1 Syndrome.
We know that between the scientists and Finn’s warrior spirit, Finn is destined for an amazing life. Finn is already defying the odds against him – he is sitting unassisted for short periods of time, weight bearing in his legs while standing, and his vision is improving as he gets stronger. He inspires us everyday and we are blessed that he chose us to be his family!
Please help us fund necessary research to find a cure and therapies for FOXG1 Syndrome.