Charley’s birthday is tomorrow, always a day of extreme mixed emotions for me. No mixed emotions for Charley, thank God…he is 100% thrilled. Charley can’t believe his luck that there is no school on his birthday due to Veteran’s Day. He has already planned his entire day, which will begin with waking up at the crack of dawn to open presents. He then plans to play Mario Brothers Kart on the Wii ALL DAY LONG, stopping only for a lunch break at his favorite eatery, the Great Barrington Bagel Store. Evening will bring cake and more presents, including a first for the Seckler family: Charley’s older brother Sam actually spent his own money to buy a gift that he picked out especially for Charley.
To see Charley in pure heaven does fill my heart. (Thank goodness all it takes is a great bagel and some Wii to make him happy!) But the pronounced passage of time marked by his birthday is frightening. As Charley gets older, we are facing more difficult situations in daily life. Due to chronic steroid use, Charley’s bone density is very low. This year he will not be skiing, because a broken leg is a risk we cannot afford to take. Breaking that news to Charley was not easy, as he is a huge sports-lover and skiing is his favorite activity. The daily steroid treatment has also stunted Charley’s growth, and he is grappling with the emotional effects of being the size of an average five-year-old. It’s tough for him to have the same shoe size as his four-year-old sister, while his older brother is growing and developing normally. In and of themselves, these daily emotional struggles are rough but bearable. It is what they represent that frightens me…the inevitable progression and heartbreak of DMD.
DMD’s aggressive timeline is what keeps us working day and night to implement our well thought-out strategy for developing a therapy for the disease. We are making unprecedented progress against Duchenne, and for the first time in history, the hope for a treatment is very real. We are thoroughly determined to reach our goal and cautiously optimistic that we will get there in time to help Charley and so many other boys we have met over the past four years, as well as thousands more we have not met.
The end of the year is a big fundraising push for us, and this year we have some effective new ways to bring new supporters into the fold. Later this month we will release a short video introducing viewers to our kooky little boy and our fight to save his life. Now instead of telling people about Charley’s Fund in your own words, you’ll be able to send a link to this video, which shows Charley in all his quirkiness and explains how we are making headway against the disease that threatens his life. We’ll send you an email when the video is ready.
In December we are sending out our brand new Gift Catalog. The catalog includes the classic Charley’s Fund merchandise (ie, the original Good Charma Believe Bracelet) along with some fabulous new items. For many of us, asking friends to shop from a fantastic catalog is a lot easier than asking friends to donate money to a cause. It is our hope that you will share the catalog with friends, and encourage them to purchase holiday gifts that support Charley’s Fund.
Finally, our annual appeal and newsletter will be mailed out to all of our supporters later this month. Please do what you can to support us this year. I know it is a difficult financial time for almost all of us. Please keep in mind that we are different from many other charitable causes in that we are on a very intense timeline. We cannot afford to experience a dip in fundraising and then just make it up in years to come. Too many young lives hang in the balance.
To save a stamp, make your annual gift now online.