Updates from Charley's Mom

We've definitely entered a new phase in terms of Charley's awareness of his disease. We are transitioning out of the "honeymoon phase," when the limitations of DMD haven't really set in. Until recently, we could kinda sorta blend in with the crowd. Our evening routine has always been tough: In addition to the usual bedtime routines Charley has to take 14 pills with a powdered mixture and then the "yucky drink", a soy-based food supplement from China that smells and tastes pretty much like sewage. We also have to stretch him for 15 minutes every evening. And in the mornings before school -- amidst the mayhem of frozen waffles and unruly bedheads and socks that don't match -- we throw in 12 pills plus a morning dose (2 oz) of the yucky drink. So while these rituals that start and end the day have always been intense, in between we have been lucky enough to function almost like a typical family. Charley is mainstreamed at school, and for the most part he enjoys the same activities as other kids. He has to limit his sodium and sugar intake and he has to rest when he gets tired, but other than that he has been keeping up great.

Over the past few months, however, Charley and his brother have been developing more of an awareness of Charley’s limitations. Just the other day, they were playing with a soccer ball in our backyard. Sam had to retrieve the ball for the 10th time, and in frustration he yelled “I hate this!” Thankfully he quickly clarified his outburst. “I don’t hate YOU, Charley,” he explained. “I love you. I just hate your condition.” It took a while for Sam to understand his feelings of anger, and in fact it is still a “process.” Sometimes his anger is directed at Charley himself, and that is really hard for everyone.

Charley has always been less of an intense personality than his older brother Sam. If he is angry about having DMD, that anger has yet to surface. He does express sadness, and that is very hard for me to bear. This winter he was devastated that he could not ski. One Saturday, I made the idiotic mistake of bringing him with me to the ski shop to buy a new pair of gloves, as we were on our way to go sledding and he had lost his umpteenth glove of the season. We ran into a family we know, and all three kids were booted up, clearly on their way to the local ski mountain. Then a friendly young salesman said, “Hey buddy, are you ready to hit the slopes?” Charley just stared at him, and when we left the store he burst into tears.

We adapt with the times, though, and as soon as the weather improved we bought Charley a bright red electric Razor scooter so he can keep up on the bike trails. Charley’s new ride has brought back the smiles, at least for now. On a recent trip to the Franklin Park Zoo, he had more fun zooming around the crowded walkways than he did looking at the animals. The highlight of this outing for Charley was practically taking out three toddlers as he zipped past them at top speed. The fact that scooters are not allowed in the park – only he was allowed -- made it all the more exciting.

I’ve got lots of adventures planned for this summer…elderly ladies and toddlers beware…Charley is on the loose!

Posted by Tracy Kramer Seckler at 12:28 PM | Permalink | Comments (0)

Two colorful packets arrived in the mail yesterday, one for Charley and one for his older brother Sam. Sammy's envelope contained a slick 2-pocket folder stuffed with colorful inserts -- promotional meterials from a summer sleepaway camp we're considering for him. Sam ripped through the pages, shouting "They have windsurfing! They have a zip line! I am definitely going there!!"

Charley's envelope was also a glossy folder with colorful inserts, but his came from Mass General Hospital; it was an information packet for new patients. The hospital sent it to us in anticipation of our upcoming appointment with a pediatric endocrinologist. Chronic steroid treatment can stunt growth, and Charley hasn't grown in over a year so are considering treating him with a daily injection of human growth hormone. His growth has stalled so much that he is by far the smallest kid in the class and he shares a shoe size with his four-year-old sister Maisy. Much more alarming as far as Charley is concerned -- he can't go on any of the rides he likes best at amusement parks because he never meets the height requirement.

As the boys grow older, the reality of Charley's existence is hitting me in the gut more often and with considerably more force. After Charley got into bed last night I sat down with Sam to view the camp's promotional DVD. Within minutes, he was 100% sold. All it took was a couple of video clips of kids waterskiing, spinning the pottery wheel, roasting marshmallows and screaming "I love camp!"

When the video wound down, Sam looked at me and asked "Mom, why are you crying?" Luckily it was easy to come back with "I'm gonna miss you so much." That reply was true, but the tears were laden with much more than wistful thoughts about how quickly our kids grow and leave us.

I feel grateful that we can give Sam the opportunity to go to a posh sleepaway camp where he can get away, enjoy the activities he loves, and make new friends. But if I'm being brutally honest, I'm also heartbroken that Charley will not have the chance to enjoy that experience. And I am stressed about finding something he can do that will keep him occupied and happy all summer.

Speaking of occupied -- and here I will break into the good news -- we are now extremely busy making plans to move forward with our research that has resulted in promising findings. To begin with, Marie Payton, our new Senior Clinical Consultant, is reviewing FDA-approved drugs and some nutritional supplements that show promise as a treatment for DMD. She is working with Dr. George Vella and a pharmacologist consultant to determine which of these treatments are ready for human clinical trials. Marie will outline a clear strategic plan for getting trials up and running. Our goal is to generate trial-based evidence that will help doctors determine which existing drugs should be prescribed for DMD boys to help them maintain strength until new therapies are developed.

That day is not very far off into the future. In fact, several new therapies -- such as a drug called Ataluren and a treatment called exon skipping -- are already in clinical trials. In addition, several biotech companies and scientists we are funding are on target to begin clinical trials of exciting new therapies within the next 2-5 years. This is not a pipedream. This is not basic science that may one day in the far off future lead to an exciting discovery. Every project we support has a clear scientific plan with a budget and timeline. The question that guides us is always "When will this be ready for clinical trials?" Of course science is somewhat unpredictable, and along the way plans can change. However we work with our researchers to ensure that they keep their eyes on the prize. And of course we all know that the ultimate prize is an effective treatment for all boys with DMD.

If you were not able to donate to our 2007 annual appeal, please consider making a donation now on our "Donate Now" webpage. Our 2007 appeal was down 44%, so we have a lot of ground to make up. Preparing for and implementing clinical trials is a very expensive prospect. Thank you for your support. Please stay tuned for more news of our progress.

Posted by Tracy Kramer Seckler at 9:50 PM | Permalink | Comments (0)

When I look back to review previous blogs, I realize how huge the chasm is between what goes on in our lives and what gets conveyed to our friends and supporters. I'm averaging a blog entry every three months, which would seem to indicate that there isn't much news to report. The truth is that our days are so jam-packed that exhaustion and brain-overload is what prevents me from writing more frequent updates. I consider it a positive sign that we are so busy. We are constantly in touch with scientists who are moving their research forward. We are working with the Darius Goes West crew to raise funds for our fight all over the country. We are collaborating with other foundations to leverage our support to have the biggest possible impact. Over the past four years, the work we do has dramatically intensified. It's a constant battle to do as much as possible without getting swallowed up whole by this intense fight.

I am very excited to have help in the form of Cheryl Rosen, our new Director of Development and Operations. Cheryl will oversee our fundraising efforts and ensure that our day-to-day operations run more smoothly. With the addition of Cheryl to our team, we are increasing our capacity to support everyone out there who wants to organize a fundraiser or get involved in some way. In this difficult economic environment, so many of our supporters have had to cut back on expenses, including charitable giving. To compensate for the fact that donations are smaller, we need to reach out to more people. That kind of effort is very difficult -- if not impossible -- with no staff. Cheryl has raised money as a volunteer for various New York- based organizations, including Horace Mann School and the Ittelson Center. Her professional background as a consultant and analyst will inform her efforts as she develops a strategic fundraising plan for Charley's Fund. Please feel free to contact Cheryl at carosen@charleysfund.org to say hello. She is enjoying getting to know our supporters!

We're looking forward to a family vacation in Florida next week. During this icy and snowy winter, we've been living in a rental house perched at the top of a precarious driveway. Getting down the driveway to meet the bus in the mornings has been an adventure in itself! It's been a long winter so far, made longer by the fact that Charley is not skiing this year. We are trying to preserve as much muscle mass as possible, and excessive exercise can work against this. While his older brother Sam takes snowboarding lessons, Charley's been great about finding alternate activities. But it breaks our hearts to hold him back from a family sport we all love.

We can't wait for some sunshine over President's Week. We'll hit the beach and the pool and the burgers. Hopefully I'll even be refreshed enough to write a post-vacation blog, including some photos.

Posted by Tracy Kramer Seckler at 8:45 AM | Permalink | Comments (0)

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.

Thank you!!

Posted by Tracy Kramer Seckler at 9:48 AM | Permalink | Comments (0)