I've co-founded a new foundation: FOXG1 Research Blackswan Foundation
March 13, 2018
BENEFITING: INTERNATIONAL FOXG1 FOUNDATION
On April 10, 2014, our daughter, Josie, was diagnosed with a very rare, severe, neurological genetic condition called Foxg1.
At that time, there were only 60 known cases of Foxg1 in the world. Now, there are just over 200.
After two years of searching for a diagnosis, we sat in the geneticist’s office as he explained to us that Josie might never talk, walk, or even sit up, and he said that, one day, we may even consider hospice care for her. I thought, are you kidding me? Never.
There is so little known about this condition, why would we believe she is limited to this dismal prognosis? We can change this.
Foxg1 is a particularly important set of genes for the early stages of brain development. Most Fox kids suffer from seizures, severely low muscle tone, inability to control movements, cortical vision impairment, feeding difficulty (many have G-tubes), and more. And this past year has been extremely devastating for our small community as five of our Fox children passed away.
Despite the challenges each Foxg1 child faces, it’s amazing to see how they all share an incredible will to try. They are fighters. They want so much more. And like Josie, they all light up the world with their laughter and tremendous smiles.
We are grateful that there are several doctors who are researching Foxg1 to try to find a cure. The more we can learn, the more we can do to help our children live easier, healthier lives. And with awareness, we can put Foxg1 on the genetics radar to be diagnosed earlier.
The International Foxg1 Foundation (IFF) is raising money for research to provide a myriad of answers, to help with the symptoms, and ultimately to find a cure.
We have created Josie’s Foxg1 fundraiser to help raise money for the IFF and do as much as we possibly can to give our children the greatest lives possible.
We believe nothing is impossible. We have a foundation, a team of doctors, and incredible support. We can facilitate change.
Josie thanks you (so much) for any contribution.
Also, the blog I've been keeping to chronicle Josie's Journey can be found at www.josiedevin.blogspot.com