After years of worries and unanswered questions as to why Hadley had delays and other issues, we received her Syngap1 diagnosis in January of 2022. After a full exome sequencing we had our answers and a lot of new questions. What will this mean for her? How will her life look different? How will we navigate this new complex diagnosis?

What brought us peace was being surrounded by families of other Syngap1 patients. We are not alone. We have support and love and compassion on our side. Syngap Research Fund has done that and so much more. A hope for a better future for Hadley and her syngapian friends. Investing in science and finding ways to connect in the rare community to give our kids the best possible outcome. We are fortunate to live in Boston near Boston Children’s Hospital which is knowledgeable about Syngap1. We have excellent educators and therapists who support Hadley, however, the harsh reality is that outside of seizure control medications (which sometimes don’t work for Syngap kids) there are no known treatments and certainly not a cure. So our children just charge ahead!

As caregivers we are determined to help our children lead the best possible life and with that we need to ask for help. We need donations, advocacy and support! Please consider making a donation today to help Hadley and all of the other Syngap1 kids to have the best chance at a happy, healthy, rewarding future.