Why I Won't Keep Quiet About Researching a Cure for Canavan Disease
An open letter to families affected by Canavan disease:
Canavan Research Illinois (CRI) is funding more research to treat and cure Canavan disease than any other charitable organization in the world. This didn’t happen by accident; it’s taken me 18 years to get to this point. My son Max was and still is the motivation behind my work and mission: to discover treatments that can help children diagnosed with Canavan disease. This is my personal choice and my personal mission. I want to make sure no other parent of a child with Canavan should ever feel like they need to do what I’m doing, join my efforts, or even support CRI.
I realize I am extremely prolific in writing about the success of our research and promoting my organization through social media. I have excitedly shared our breakthroughs with other families in parent groups. This is my way of sharing the fruits of our research and letting people know about things they can do, if they choose, to potentially help their child’s health and quality of life.
My mission is to work towards helping affected children by funding research. Sometimes people may not have the opportunity to learn about those advances, so I like to share that information with other parents. This should in no way make a parent feel guilty for not joining me, or feel shame because they don’t want to give their children experimental medication. My goal is to make the information available to other parents, so they have the choice I never had when my son was a baby.
When I talk about my own son it is because he is 18 and a half years old, and still here. He’s still doing well and he has been taking and testing many of the things that can offer help to other children. I am not comparing him to anyone else’s child, but trying to offer hope to families who are still being told there is nothing they can do, and that most kids die between 2 and 4 years of age. This is not usually the case, and no one should have all their hope shattered without seeing the other side of this disease.
I share my story with other families to help show some of the positive things. I share my story with our donors and supporters to let them know we are making progress because of their help. I share my story to let people know what it is I’m doing with the hard earned money they choose to donate. But, I do not share my story to ask, urge or shame any other affected family into joining me or giving their child the same medicine I give my son. I share my story in order to share information, and let people know there are choices and options available to them.
I didn’t get to where I am today by being quiet; that’s not my personality. This was all my choice, and my own sacrifices to make. I would never ask anyone else to do what I am doing. Canavan Research Illinois never has and never will rely on money from families raising children born with Canavan disease to financially support research. Instead, we have a large and loyal donor base. Of course there are many families who choose to do a fundraising event, or donate money in honor or in memory of a loved one. That is wonderful and appreciated because everything helps! But, I do not urge or force anyone to do this — it’s a very personal choice. I have chosen to not raise any money for my own son’s medical bills; many people have, and that is also a personal choice. I feel as the president of a public charity doing so could be confusing. So, I only raise money for CRI — my personal choice. I am not wealthy. We live in a small, modest ranch home with no basement. My two boys share a room so I can work from home and enable CRI to have an office in the third bedroom.
I am sharing with other affected families my true goal and intent as to why I post about my organization and my own son. I realize sometimes intent can be misinterpreted, because writing doesn’t always communicate the author’s tone. I would not try to force or shame anyone into joining me on my mission, make anyone think they should be doing more (or doing anything), or try to make people think that by sharing information about my son’s progress is to make him seem better than another child.
I share these things so people who are interested can access the information to have options and a choice if they want to pursue anything else that perhaps they didn’t even know existed.
Please contact me at [email protected], if you have any questions or would like more information about Canavan Research Illinois. We encourage sharing information with each other, without feeling obligated to do anything, join anything, or agree with anything. Our children share a diagnosis, and even though we are not all on the same path, we are all in this together.
The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.