Together Let's Make the Future Brighter for Foxes like Yenyen
As many of you know by now, Yenyen, our one-year-old baby, was diagnosed with FOXG1 syndrome - a rare and severe neurological disorder that causes an array of disabilities. We felt hopeless knowing that the diagnosis had no cure but we continued to celebrate her life as we slowly got to know the FOXG1 families who were battling the same challenges with us.
We still have so many uncertainties in our FOXG1 journey but the FOXG1 Research Foundation gave us a spark of hope for a brighter tomorrow for Yenyen by leading a historic effort to create the first treatment to FOXG1 syndrome - a gene therapy!
But in order to reach our Yenyen and all other incredible kids living with the syndrome all around the world, we may need a little help from you through donations or sharing this page with your friends.
Every gift brings us closer to life-changing treatments for children like Yenyen. Thank you from the bottom of our hearts for being a part of this mission.
If you haven't heard of Yenyen and kids with FOXG1 syndrome, watch her story here:
Yenyen as a newborn
Yenyen was a healthy-looking baby but she got left in the NICU for choking on milk. By this time, we have already observed her jerking. She was also a heavy sleeper, so heavy we had to force her to wake up so she could drink milk.
Her delays and movement similarities with other foxes have now become clearer. It was bittersweet knowing how Yenyen would probably grow up to have disabilities but the families who have walked the path before us have shown us that we may make it as well.
As what Yenyen's Papa Ian said, "In this one year, we learned that raising Yenyen means seeing beauty in the smallest moments. It means celebrating every smile, every movement, every sound - things that others may take for granted."
She was already starting her physical therapy by this time when we received her genetic testing results - FOXG1 syndrome, the first confirmed case in the Philippines. We had no one to run to because even her doctors were facing it the first time until we met the FOXG1 support group.