Friends and Supporters,
Today is February 29th, the rarest day of the year, where the world is celebrating Rare Disease Day. Rare Disease Day is a globally coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Across the world, over 300 million people are living with a rare disease, of which 72% are genetic diseases.
Our Rare Disease Day campaign comes to an end today where we have told you 14 stories of rare diseases spanning 10 different states, 2 countries, and representing 5 different rare diseases. Our hope was that these stories shared hope, love, perseverance, faith, and resilience.
Today is about Hayden, the little girl that has changed our lives and the lives of so many. Hayden is now 2 years old and has made so much progress. She is now pulling up and cruising along the coffee table, crib, and anything else she can pull up on! She is starting to find her voice with intermittent coos and screams of excitement but still has not said any words. We are patiently waiting to hear her sweet voice for the first time. She has fully transitioned off her feeding tube from a nutrition perspective and eating all her calories orally! However, she still needs the tube for hydration as she is still working hard on swallowing liquids.
Sleeping has been a struggle for Hayden. However, we received great news from her last sleep study that her sleep apnea has improved significantly! This is a huge relief for us, but it doesn’t change the fact that her circadian rhythm is off, as is the case with many with Schaaf-Yang Syndrome (“SYS”), which means she wakes up at all hours of the night ready to party. We also found out Hayden has a dislocation in her left forearm, which explains why she has had difficulty straightening and bending her arm since birth.
Hayden still has therapies five days a week even doubling up some days. She is working hard to develop and learn new skills, and we see progress every day. She has also started going to preschool one day a week to get social interaction with kids her age. She has a best friend, Amy, at school who hangs out with her, brings her toys, and helps her with things she struggles with. It warms our hearts how innocent and loving kids are, and we are grateful for Amy.
We still have the same dreams for Hayden as we did when she was born. They are simple. We hope that she is happy and reaches her full potential. These are the dreams we have for all our kids, and it looks different for each one of them. However, for Hayden, her potential could be extended through research and finding therapeutic treatments, or eventually a cure for SYS. This is the reason we started Faith for Hayden, so we could give Hayden hope through funding research to improve her life.
Today, as we celebrate Rare Disease Day, we invite you to be part of the hope for Hayden and the other stories we’ve told you in the past two weeks. These kids are worthy. They change lives. They give us examples of hope, love, perseverance, faith, and resilience.
Please consider donating to Faith for Hayden to help fund more research. To double your impact, Courtney and I will be matching any donation made, up to $14,000. That is equal to $1,000 for each story we have told you in the past two weeks. Make your donation at the following link: www.faithforhayden.org/donate.
Thank you for your continued support. We are truly grateful.
With love,
Matt and Courtney
