Our daughter Marin has battled severe seizures almost her entire life due to a rare genetic disorder called SMC1A Epilepsy, an even more rare subset of Cornelia de Lange Syndrome (CdLS). Despite being told she would have limited motor abilities, and would have a significant global developmental delay, Marin has continued to defy the odds. With a fighting and fiery spirit, our girl continues to surprise us with all of her accomplishments. Marin's outlook would look very different if not for the help of an incredibly supportive team of doctors who always encouraged us to push the envelope in exploring the most cutting edge therapies and epilepsy treatments, for our girl.
Today Marin is a happy and healthy 15-year old whose seizures are under good control, and is continuing to learn new things and move forward with her development at her own pace. Marin communicates using some sign language, runs, swims, plays independently and can feed herself. All things we were never sure she would be able to do. We know so much of this has been possible because of the help of Marin's VNS (Vagus Nerve Stimulator) and anti-seizure medication.
For the first 10 years of Marin’s life we did not have a formal diagnosis or known cause for Marin’s epilepsy. With advances in genetic testing we now have a better understanding of Marin’s disorder and are able treat Marin’s epilepsy more effectively. Of the 50 million people living with epilepsy, up to 50% don't know why they struggle with seizures. This puts them in a battle they don't know how to fight, let alone win. Our fundraising efforts are to help those who fight every day against the unknown. Thank you for generously donating to help us get closer to a cure. 100% of the profits of The GRACE Collection benefit epilepsy research.