Friends and Supporters,
Today we bring you a beautiful 7-year-old girl, Shadi, of California. We’ve unfortunately never had the pleasure to meet Shadi, but her mother, Roya, was one of the first Schaaf-Yang Syndrome (“SYS”) parents we were put in touch with. This post is about Shadi; however, I’m going to take a quick detour to Roya. We admire how much of an advocate Roya is for Shadi, and all her children. Roya is a big part of the Schaaf-Yang community, which includes organizing and advocating for our children. Roya – Shadi is lucky to have you.
Shadi was born with SYS, which primarily affects her muscle tone, causing difficulties with skills like walking, talking, and feeding. Unfortunately, Shadi faces many challenges due to SYS just like her fellow SYS warriors, but her most difficult issues include the progression of scoliosis (which affects her ability to stand/walk) and struggles with communication. Despite the challenges she faces daily, Shadi has proven her strong spirit by continuing to push toward her goal of walking by age 8. She’s taking steps on her own with assistance, and you can see the pride on her face while in action. We are all rooting for you, Shadi! You got this!
I mentioned in a previous post about “inch stones”. They are real. You learn celebrate every achievement, despite how small others may think it is. You learn to live in the moment and enjoy the accomplishments that are happening in front of you due to the determination and resilience of your child. As a parent with a child with special needs, I can relate to the pride that can be seen in Shadi’s face. If I had to bet, Mom and Dad were smiling from ear to ear as well, and maybe had a tear or two.
One of the toughest questions I’ve asked parents in this Rare Disease Day campaign is how having a child with a rare disease has changed your life. Instead of trying to paraphrase Roya’s words, here they are… “So many things about our lives individually and as a family have changed, and it’s not always been easy or fair, but having a child like Shadi has taught us how to adapt so that we can all still live our lives. As parents, we’ve learned to have incredible patience, appreciation, and hope for the future.”
Fortunately, the tough question is followed up by the one of hopes and dreams for your child. Roya said, “Ultimately, our dream for Shadi is for her to be safe and happy. We hope that she can live a life full of joy, friends, and fun. Anything else is just the cherry on top.” Safe, happy, joy, friends, fun… Isn’t that what we all want?
Shadi has a sweet and kind personality. She loves to be around people, she likes to dance, and she will melt you with her deep hugs (although she can be sassy with her brothers!).
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
