For the past four years, through Chelsea’s Wish, The Chelsea Hutchison Foundation has had the privilege of hosting families with all expense-paid trips to Epilepsy Awareness Day at Disneyland, along with the most amazing Expo anyone has ever created for the epilepsy community. I am writing to ask for your help in allowing us to continue this project for families in 2017.
These are not ordinary families - and this is no ordinary vacation! The profound impact this opportunity has on them is so much more than an all-expense paid vacation.
The Expo offers a wealth of information - exposure to professionals, treatment options, education and hope. They are able to come face to face with some of the top epileptologists, vendors and non-profits and learn of new treatments and assistance available. That alone is invaluable to these families - to have all of this available to them, in one place.
Attending this event, these families immediately get the sense that they are not alone - and that is so amazing to witness! Many times in their daily lives dealing with a child living with Epilepsy, there is such isolation and not only for the parents, but the kids as well. Our Disney families meet and instantly bond with the other families who understand the struggles, the fear and the endless search for answers. Only 20% of those diagnosed with epilepsy are controlled with medications. One in 26 will be diagnosed with epilepsy in their lifetime and it is estimated that up to 50,000 Americans die each year from seizures and seizure-related causes, as Chelsea did.
The camaraderie seems to develop instantly but unlike those instant friends of our youth, these friendships have proven to last long after they board their separate planes for home. We watch it daily on social media - someone posts that they are sitting in the hospital, waiting and sick with worry and more often than not, the first comment of support is one of their Disney friends offering encouragement, prayers and simple understanding that no one else quite gets. These people are a community and they have an appreciation, commonality and empathy that comes from being in similar shoes. They are uplifted by the love and support of each other.
Many times it's a single parent home - imagine that!! Dealing with this overwhelming monster of a condition - without a partner? We can't forget the siblings, but sadly, siblings often have to take a back-seat, making concessions in little and not so little ways. Siblings are often the forgotten ones, not by choice, but by necessity. That's why the trips through Chelsea's Wish include the whole family, not just Mom and Dad with their child living with Epilepsy.
Walking through those gates at Disneyland in Epilepsy Awareness Day, there is purple everywhere - a virtual sea of purple! This visual impact is especially powerful to those adolescents that isolation strikes deep. It's a subtle, but very powerful message that is not lost on these kids. "I'm not alone" As one parent so beautifully stated "For once, our "normal" was completely normal". How great is that??
Please take note of the smiles on the attached photo. Not only the smiles on their lips, but in their eyes. In these lives that is all too often is a rare thing. So please, open your hearts to Chelsea's Wish and put smiles in the eyes of families that so desperately need them.