Friends and Supporters,
Today we get to bring you the story of Emma from Chicago. Emma’s parents, Justin and Kim, were the first family we met when we entered the Schaaf-Yang Syndrome (“SYS”) community. They take advocacy for Emma to the next level. Their annual fundraising event “I Gotta Guy Sausage Festival” has raised over $1 million to fund SYS research. I went last year, it was amazing. The SYS community truly wouldn’t be where it is today without their commitment. We are inspired by them, and their efforts are a big reason we started Faith for Hayden.
Emma is a happy 9-year-old girl who was one of the first to be diagnosed with SYS. Emma struggles with delayed learning and language skills, which makes communication with peers difficult. In addition, she suffers from low muscle tone, which creates physical challenges. Also, as is common in SYS, she suffers from sleep apnea. Emma also has behavior issues and impulsive tendencies that come with her diagnosis.
However, this doesn’t impact Emma’s ability to be a shining light for her friends and family. Emma always wakes up happy with a smile on her face and is ready to make a positive impact on people she encounters. We’ve seen this firsthand the handful of times we’ve had the pleasure of meeting Emma. Emma is also a confident and happy young girl. Kim said when we pointed out the confidence she has that Emma has “no shame in her game!”. Emma also has a loving side. Go look at the picture of Emma cuddling with Hayden on the blog post, words can’t do the picture justice.
Emma is also an accomplished athlete. She has competed in different sports in the Special Olympics (track & field, basketball, and soccer) and won the gold medal in the standing long jump! Look at the blog post for the excitement in her face wearing her gold medal!
I asked Justin and Kim how Emma having SYS has changed their life. They said, “Gaining entrance to the rare disease community has been fulfilling and rewarding. We are grateful for the network we have developed, and the relationships built with like-minded individuals with a desire to find therapeutic treatments for all children living with rare diseases.” They embody this every day. The way they advocate for Emma, bring awareness to rare disease, and most-importantly, raise money for research, inspires our entire community. We are proud to call them friends.
Justin and Kim’s hope for Emma is that one day she can live an independent life. Their fundraising, and your donations, are helping us get to a point where she can achieve that.
Now here is the toughest part of writing this – where I ask you to donate. We have friendly banter with Justin and Kim about who can raise the most money and Kim quickly tells me “It’s not a competition!” I think she says that because she fears we will raise more money than they will. So here is the hardest part… Please consider donating to support Emma at http://tinyurl.com/25kzet9k and write a comment to support I Gotta Guy. This will increase Justin and Kim’s fundraising and raise the bar on us. And Kim is right, it’s not a competition, everyone benefits the more we raise.
With love,
Matt and Courtney
