This is an exciting day for us. The past 9 months have been filled with lots of emotions. Ups, downs, shock, concern, happiness, fear, sadness, joy. We didn’t know what we were in for when Hayden was born. We thought we were welcoming a 4th child into this world and would have to deal with the normal newborn challenges – lack of sleep, changing diapers. We didn’t know she was going to be born with a genetic disorder we had never heard of. We didn’t know what was in store for her, or us. We still don’t know.
What we do know is we have a beautiful blessing that has come into our lives. We know that we will unceasingly do two things for her. First, we will love her. Every child deserves to know that they are loved by their parents, and Hayden will be no exception. Second, we will do anything within our control to help her achieve her potential.
The first one is easy. The second is more challenging as there are a lot of things out of our control. We have, and will continue to, give her access to the best medical care we can find. We have, and will continue to, give her the physical, occupational and feeding therapy she needs. But the fact is she has a genetic syndrome for which there is currently no cure and very little treatments available. This is why we are so excited for the launch of Faith for Hayden because we can begin to impact available treatments and ultimately find a cure for Schaaf-Yang Syndrome.
We have learned so much through the creation of this organization and have been overwhelmed at the support we have received in this journey. Pro bono legal services from a person I’ve never met. Pro bono accounting services from a friend we met 18 years ago. Pro bono web design services from a close friend. Offers to kick off the fundraising by cutting long, beautiful locks of hair. Support and offers for help in any way we need. All of this help and support has brought us to the point where we can share the blessing of Hayden with the world and begin to do what we can to find a cure for her and other patients affected by this syndrome.
Thank you for visiting the site, thank you for being a friend, and thank you for helping us improve Hayden’s and other Schaaf-Yang patient’s lives through your donations to fund research for Schaaf-Yang Syndrome!
If you feel inclined, please go to the donations page and get us started!
With love,
Matt and Courtney