When Hurricane COVID Hit Our Rare Disease Island

As parents of kids with disabilities, most of us have heard the “Welcome to Holland” analogy comparing our child’s birth to that of a vacation. As parents you spend nine months reading books, planning and imagining all the different places you will visit when you get there, only to end up in a completely different country once your plane hits the ground. Now, some parents have simply ended up in a country that most of us have heard of, such as Switzerland instead of Austria or Croatia instead of Italy. There are lots of resources for you to find your way around and guides that can help you find what you need.

When you have a child with a rare or undiagnosed disease, it can feel like you have been dropped on a remote island in the middle of the night. There are no street lights, no maps, no books, no guides, nothing. There are a few people on the island with you, but you come to find most of them don’t speak the same language as you, their child lives with something different. You are scared and feel alone and you have no idea where to start, but slowly, the sun starts to rise and you realize how amazingly beautiful this place is. While you spend most of your time alone on the island, you have lots of friends and family that come to visit often, helping you and supporting you where they can.

Then suddenly and without warning, a giant storm by the name of COVID hits.

Your beautiful island becomes dark again. The feelings of uncertainty and fear return 100 times what they were the day you came to the island. You are being told that the storm is much more deadly for you and others on the island than for anyone else. The boats that brought your friends and family to the island can only pass by now. In the beginning of the storm, it seems there are more boats than ever before passing by the shore. They all wave, send supplies and tell you they love you. Then time goes by and fewer and fewer boats come until eventually, you are lucky if you see one at all. The storm is still lingering over the island and there really isn’t an end in sight. In the distance, you can see large ships carrying loads of people. They are celebrating that their storm has ended. They laugh and carry on, but nobody waves, nobody sees your island, nobody cares.

All of us here hope that someday, the rest of the world will remember that some of us are still fighting this storm. Be kind, be understanding, be supportive. I can’t tell you how hard it is to watch those boats go by with everyone that has forgotten about you. We could use your love and support, now more than ever.