We have something in common with you. A really big something in common. We have beautiful daughters who we love that have been touched by this odd string of letters: HNRNPH2. It’s changed the course of their lives in a global way and until recently there was no one else who truly understood what it was like to raise a child disrupted by that odd string of letters… but now we’ve been connected and we want you to know you’re not alone.
We want to introduce ourselves to you. At this time, we are an enthusiastic and supportive group of parents who have banded together to make a difference. What a validating experience it has been to connect to other families, who so completely understand. These sweet girls possess physical similarities and behavioral ones too. Sharing stories of their early development has been completely astounding, because it’s as if we have been living parallel lives in raising our atypically developing daughters. In addition, hearing and learning from one another has helped us to care for our girls more carefully as we try our best to navigate a situation that has no roadmap whatsoever for us to follow. Our coming together has alerted us to medical conditions that some of us experience, that the others can now get checked out and be on the alert for. Ideas about adaptive equipment, alternative therapies, dietary supplements and contact information on trusted doctors are exchanged between families and what great resources we’ve become to one other. We are also a group that keeps hope alive; hope that if we join together with a group of world-renowned doctors and researchers, we will find interventions that can change the girls’ lives for the better and ultimately, a cure.
Most importantly, we want you to know we are here for you and though we haven’t met, we think about you and your daughter and would love to hear about how she is doing. We remember how difficult it was before finding each other and we want to be connected with you. Please contact us, just as soon as you can.