The first story we are going to tell is about Nathan from California. Nathan is one of the first people we met with Schaaf-Yang Syndrome (“SYS”). Nathan is 9 years old and was diagnosed with SYS when he was one year old. His parents, Leslie and Michael, have inspired us by their love and commitment to Nathan and we are happy to be part of this wonderful SYS tribe with them.
Nathan is globally developmentally delayed and has difficulty with walking, eating, talking, learning, and fine motor skills. In his 9 years, he has had over a dozen surgeries. He sees 10 different specialists yearly, attends multiple therapies weekly, and receives a shot of growth hormone daily. Nathan’s biggest challenges currently are on the physical front and his ability to get up and down on his own – once he figures that out, his world will be so much bigger for him to explore on his own! Nathan is still non-verbal, but has so much to say, but he just can’t get it out yet. Leslie and Michael have all the faith that he will learn to talk with his voice, and they cannot wait to hear what he has to say.
When we joined this rare disease community, someone shared with us the thought that we need to celebrate the “inch stones”, as they are the steps to “milestones”. For Nathan, his latest inch stones are making new noises to communicate, nodding his head yes, waving goodbye to a friend and climbing the stairs while only holding on to one hand. All these inch stones add up and make his mom and dad proud of him.
Leslie and Michael describe Nathan’s diagnosis as both a blessing and a hardship. Nathan has taught them how to advocate for people who don’t have a voice and that mental strength is just as important as physical strength. Nathan has taught them that asking for help is vital in raising a child with a rare disease and that raising money and spreading awareness are tactile ways to move research forward. However, the biggest thing that Nathan has taught them is that love and hope are the most important things to hold onto when rare life gets scary, which happens often.
When I asked Leslie and Michael what their hopes and dreams for Nathan were, this is how they responded. “We pray first and foremost that Nathan knows how loved he is. God made him for a reason, and he has changed so many lives just by being himself. We hope that Nathan can continue to gain skills towards independence and have a say in the kind of life he wants to live as he gets older. Hopefully that entails lots of camping and traveling with Mom and Dad :).”
Despite all of Nathan’s challenges, that doesn’t stop him from changing lives. He has a magical way of rallying people to be more loving, more accepting, and more inclusive. We’ve seen this firsthand. Nathan makes all of us better.
To donate to help to continue to fund research to help find therapeutic therapies or a cure for SYS, please donate at www.faithforhayden.org/donate.
With love,
Matt and Courtney
