My wife and I are doing our second walk to raise funds in less than 2 weeks.
I guess we don't see it as much of an invasion of our privacy. Let's face it, at younger ages it may not be totally clear they have a disability, but as time progresses, there will be little doubt. So, we can't really hide the fact that our sons have a serious physical disability. We knew early on we wanted to do something, and raising funds that would go to research seemed like the best course. So far, I'd say we haven't had any ill effects from doing the walks, and at least it feels like we're doing something... really the only thing we can.
Amanda, I can understand your difficulty in making the decision to whom to tell about your son. I've been in this boat for over 2 years now, and I can say that we have NOT told everyone that we could. Our friends and family and school administration knows, but we've made the decision for the time being to not share it with the rest of our son's world. So kids at school don't know, their parents don't know, etc. Now I am not pretending that maybe they don't realize something is up (after all, my son is a lot shorter than most other students due to steroids, is slower than his classmates, etc.), but we have not felt the need or desire to put the Duchenne "label" on our son at this point in that environment. I think this decision is related less to a feeling of loss of privacy and more to the desire to keep some normalcy in our son's (and our) life. Of course that does present a quandary when fundraising, but to date we've been able to accomplish our goals without the headlines. I will say though that lately I've begun wondering if it is time to go a little more public, but that is something I am still working through.
Maybe you could organize the fundraisers and still keep the details private by just advertising how this issue has become close to your heart due to its impact on a family member.
I think the important thing to focus on though is doing what feels right to you and your family at the time. Some families are ready-set-go the second they get the news, and others need more time to process the information and what it means going forward. Whichever way you go, you will find someone else who feels similar to you, and you will get the support you need here (from parents on both ends of the "sharing" spectrum). Good luck with your fundraisers!!
I suppose I'm on the opposite end of the "share" spectrum. ;) We have done a couple of fund-raisers now where Max's pic is everywhere, and all of our friends and family know about his diagnosis. During Coach to Cure MD a couple of years ago, we were part of the Texas A&M football coach's press conference, we were interviewed by local media, etc. Part of why I'm so open is the fact that there is no cure, and a parent can definately feel hopeless in this fight. Sharing Max's story makes me feel like I'm "doing something" -- raising awareness, funds, etc.
I guess I've never considered Duchenne a label, but put it out there that this is a condition that Max has, but it doesn't define him or take over our family life. I also think it might be hard on kids if they (or their classmates/parents, etc.) don't know about the diagnosis. I think kids can be mean to kids that are slower, fall often, etc., if they don't know that there is a reason behind it. I certainly don't want Max to be pitied by other kids, but a little understanding can go a long way.
We have been met with such an outpouring of support and love that has been so uplifting, and sharing with the world at large has given us that. We have also had a great turn-out at our events -- I think it's always easier to raise money when there is a face and person to connect with. Something that I didn't anticipate happening is that, at only three years old, Max has been an inspiration to others. I have had several people tell me how Max has made them look at life differently (not sweating the small stuff, etc.), or he has just plain-ole captured their hearts.
But I agree with Allyson that you have to do what feels right for your family. I've always been a really open book, so it feels natural to me to be open about this too.
Good luck with your event!
Great post. We too have spent a great deal of though trying to balance fundraising with privacy. We have decided not to fund raise in our own town so as to protect our children. There are just so many ways to be productive while still keeping it at an adult level.
First of all, we pulled in $10K dollars in one morning by having a United Way pancake breakfast at work. It cost us practically nothing in terms of food (less than $100) and the response was fantastic. We're going to do it every year. We even wrote a United Way how to guide which PPMD published. My wife Ruth is now the PPMD United Way Parent Advocate. If you need help, please ask!
We let all our family, friends, and coworkers know to shop Amazon by first travelling to www.ParentProjectMD.org/Amazon all year all the time. 5% of the purchase price goes to PPMD in form of a check. It costs people 'zero' money - all they have to do is remember to go the link first. We send out reminders too!
My sister, sister in-law, and wife along with a lot of parents created a 'Recipes for Our Sons' CookBook that will be published in the next month or two. You will be able to order it via Amazon.com.
We funded a listing service for PPMD that let's people search for employers that will match donations. The link is on the PPMD web site.
We donated $50K to help PTC raise money for heart related research. Part of it was a 401K loan, part of it was from the sale of some stock we had.
My point is there is plenty, plenty to do without directly involving your child ro children. My personal approach is that mustI do three substanative things a day to help fund a cure. It could be emails reminding people of the Amazon effort, donating money, calling my congressman, asking other parents about if they have thought through the United Way, planning the cookbook distribution, writing how-to guides, etc.
I think won of the worst things we can do is wait. Duchenne is relentless and we don't have the luxury of waiting. I can't sleep well at night if I don't work to help my son and all the boys.
Each family needs to do what feels" right" for them at the "Duchenne Stage" they are in. We too felt very "protective" early on. But what has helped us tremendously to cope and feel hopeful is the very strong support we have recieved from letting those around us know. People really DO want to help! It's not easy to share but it is soooo much easier to "feel" supported in our struggle. You too will feel incredibly blessed by those around you who will rise to the challenge of fighting Duchenne for your son! And through that you will feel stronger than you ever thought you would! There is strength in numbers! When the time is right, you will "want" to surround yourself with a "team" of fighters. It is OK to want to "protect" your son in the meantime.