February 29th (28th on non-leap years) is Rare Disease Day (www.rarediseaseday.org). Rare disease day was created to raise awareness and generate change for the 300 million people worldwide living with a rare disease. Hayden is one of those people living with a rare disease. She is one of about 250 people worldwide known to be diagnosed with Schaaf-Yang Syndrome, a genetic disorder related to a mutation on the MAGEL2 gene on Chromosome 15. Feeding difficulties, developmental delay, joint contractures, intellectual disability, sleep apnea, and autism spectrum disorder are common with her syndrome. Early intervention and therapy are the best known treatments to help her have the best life she can have.
Hayden’s weeks are filled with doctors appointments and therapies. This is typical for a child with a rare disease, it just may look a little different based on the unique challenges they face. Also, the challenges change as they enter different stages of life. Faith for Hayden was created to make the therapies and outcomes of people living with Schaaf-Yang Syndrome better and eventually find a cure. Real research is going on by real people across the world.
On this Rare Disease Day in 2022, we are overwhelmed with the support you have shown to raise awareness for Schaaf-Yang Syndrome, and advancing research for Hayden and her SYS friends. This year we raised $8,619! We are so happy to be able to match your donations to double your impact. In total, we raised $17,238!!!
We are so grateful for you. Hayden is such a blessed girl to have so many people praying and supporting her each and every day.
With love,
Matt and Courtney
