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 because you can only do little – do what you can.”
So we are doing what we can…
When we shared with our friends our plan to start a non-profit to raise money for research, the immediate response was encouragement, support, and ideas of how they could pitch in to help our cause. The prevailing idea was to raise money to cut off the hair of Derek and Jimmy. It might not sound like much, but Derek has the hair of Samson and Jimmy hasn’t had a shaved head since his Army boot camp (and his wife was afraid his hair wouldn’t grow back). We decided that if we raised $10,000 between September 1st and October 14th, we would shave their heads and Derek would cut off his signature beard of 15 years.
When we first started the campaign, it was slow going at first and doubt crept into our minds as to whether what we were doing was going to be successful. We also began to doubt what impact $10,000 could make on such a rare and complex genetic disorder. I then get back to the quote. What if this fundraiser is the one that funds research that develops a new drug, what if this is the fundraiser that allows for a new idea that will lead to a breakthrough, what if this is the fundraiser that supports a grant for a new, bright doctor to enter this field of research that leads to a cure.
But looking at the smiles in the photos below and reflecting on the 36 donors from as far as Canada, New York, Chicago, Indianapolis, Pittsburgh, and Florida and as close as our next door neighbors, it is clear that this event was more than about raising funds, its about Hayden changing the world. We are getting to share Hayden’s story and let her be a light for the world, and she is changing hearts along the way.
So we will close with gratitude.
To Derek and Jimmy, we love you and are so thankful for you guys putting yourselves out there. We are grateful for your sacrifice and helping us raise awareness and funds for Hayden and her many other friends with Schaaf-Yang Syndrome.
To our donors. 36 donors, 6 weeks, $10,389. Wow! We can’t thank you enough for your support. Every gift, no matter the size, is appreciated and is going directly to support Schaaf-Yang Syndrome research. You are making everything about creating this organization worth it.
With love,
Matt and Courtney