Blog Posts
Annual Celebration
On November 11th, we held our first Annual Celebration of Faith for Hayden. When we started Faith for Hayden, this event was going to be our marquee event each year where we expected to bring the most people together and raise the most money. When we began planning for this event, we didn't know what to expect. Our hope was 100 people would show up and we would be able to raise $50,000. That would have been success for the first year that we could build on for years to come. Little did we know the support of our family,
Hair for Hayden
When we embarked on the journey for Faith for Hayden, we didn't know where it would take us. We knew we felt compelled and called to do something for our little girl, but were overwhelmed with the magnitude of challenges she would face and the medical complexity of her disorder. We have recently seen a quote another parent of a special needs child shared that describes this helpless feeling of not knowing what to do, or what impact we could make, when it comes to Hayden's disorder. It goes: "It is the greatest of all mistakes to do nothing
Hayden Goes to Chicago!
The past 11 months have been full of so many emotions, and this past week was no different. Matt and I attended the Foundation for Prader-Willi Research conference in Chicago and brought Hayden along. Due to the similarities of PWS and Schaaf-Yang Syndrome, the two groups are currently collaborating on their efforts. Matt attended the research day that consisted of all the medical/pharmaceutical professionals that are digging into the MAGEL2 gene where Hayden has her duplication. He knew that a lot of the sessions would be over his head but wanted to be in the room asking questions, taking it
Faith for Hayden Launch
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