Hands down, the highlight of my day is going to the mailbox. Mornings here in the Seckler household are totally chaotic. I have a crazy hour of changing, feeding, and bathing Maisy; making breakfast for the boys; trying to come up with novel ways to get Charley to down his “muscle drink;” and then hurrying the kids out the door so the boys can get to camp on time. Once Sammy and Charley are safely deposited at Camp Eisner, I head right for the post office.
Lately it seems as though something uplifting is always waiting there for me. Today it was a packet of checks from the Philip family in Wayland, MA. For Nikki Philip’s recent birthday party, she asked her guests to donate to Charley’s Fund in lieu of bringing a gift. The invitees were happy to give to a good cause. Everyone brought checks, ranging in amount from $100 to $20. Nikki’s parents generously matched the gift checks. They also bought Charley Pops to give out as party favors. Charley Pops are delicious lollipops tied with a tag that explains what Charley’s Fund is and why we need to raise money ($5/bunch). From a simple birthday party, Nikki raised $1,250!!
A benefit of living in the high-tech age is that I get to check the mail all day long. I check my e-mail several times thoughout the day, and there is often an encouraging word from a well-wisher or news of an on-line donation. Recently I received this message in my in-box:
Hi Mrs. Seckler and Family,
It’s Marina Lane from your 6th grade English class. At first I didn’t really understand about the disease, but now I do, compliments of your website. I enjoyed the pictures of Charley scattered on the website, and hope that he can remain that happy all of his life. If I had money to give to the fund, I would, but I dont’t.
So I’ve been thinking of ways to help support Charley’s fund, and I since I am going to Lenox high school next year, maybe I can attempt to expose the children and parents at Lenox about this disease and the progress of its reasearch. I’d love to help in anyway I can.
I will tell my friends to visit your site, so they can have the same benefit as I did. I also know that many of them live in different places, and maybe they can expose people around them to the facts about DMD also.
Hope I can help.
Sincerely,
Marina Lane
P.S. One way that I can help if you ever need it, I can babysit for no cost. I’d love to meet Sammy, Charley, and Maisy and really get to know them.
I got in touch with Marina, and she is going to get a bunch of friends together to package more Charley Pops so we can sell them around town and on the website. For now, call me at home (413) 528-5745 or e-mail me (info@charleysfund.org) to order Charley Pops.
More good news came last week from my nephew Jeremy (once again, via e-mail). His sixth-grade friends Carlyn Shear and Annabel Edelson set up a lemonade stand on Park Avenue, complete with signs and information about Charley’s Fund. They raised $320 in one afternoon, and spread the word to hundreds of passersby on the Upper East Side. Another young friend, Charlotte Borner, has asked her bat-mitzvah guests to donate to Charley’s Fund instead of bringing a gift.
I have found that adolescents and teenagers are very eager to help Charley and other boys suffering from DMD. If you have a “tween,” please share the Charley’s Fund website with him or her. Although the truth about Duchenne is upsetting, kids seem to have a universal desire to do what they can to help. A great way to raise money is to ask for donations in lieu of gifts to bar-mitzvahs, birthday parties, weddings, and other celebrations. We have printed adorable post cards to alert the honoree that a donation has been made in his/her honor.
Tomorrow Benjy and I leave for the annual Parent Project Muscular Dystrophy conference in Cincinatti, OH. This is an impressive gathering of many of the top physicians and scientists who are experts in the field of Duchenne Muscular Dystrophy. There will be workshops ranging from stretching your child to breaking social isolation to potential therapies. We are expecting two and half days of intense education; we will report back on what we learned when we return. When the conference is over, we are taking the kids to Martha’s Vineyard for a week-long vacation. This combo-trip embodies our approach to life: work for a better future, but remember to live the present to its fullest.