CdLS — The Water Cooler

 

We were thrilled to meet Hiker Jim last night as he made his way through Connecticut. As some of you know from previous posts here, Jim has been hiking the Appalachian Trail and raising money ($2,000 to date) and awareness for the Foundation along the way.

Several staff members were able to get together with Jim, his hiking partners and his hosts for the past few nights in Lakeville, CT. In addition to meeting Jim for the first time, we celebrated his recent birthday with carrot cake (his favorite) and a champagne toast.

While he was here, we also put Jim to work doing interviews with local newspapers, including the Hartford Courant. You can read the article at http://www.courant.com/news/local/sr/hc-hiker0717.artjul17,0,2759692,full.story. -MM

We’re not the only ones who have a blog dedicated to CdLS. There are several parents documenting the daily joys and struggles of raising their child with CdLS while balancing work, home and family. Here are a few we’d like to share:

 

■        Ben and his brothers: Life with three boys and CdLS – The title of this blog says it all. This working mom of three young boys documents the trials and tribulations of trips to the pediatrician’s office, soccer games and her husband’s cooking. (Be sure to check out his blog too: Mark Ruins Dinner.)

■        It’s the Little Things – In addition to raising David (CdLS) and Matty, this mom finds time to make jewelry. In celebration of David’s fifth birthday, she’s selling a special necklace and giving a portion of the proceeds to the Foundation.

We hope you enjoying “peeking” into the lives of these families. If there’s a blog you’d like to share, let us know. –MM

  

 

The CdLS Connects Grandparents Bulletin Board—an online forum for grandparents of children with CdLS—is up and running.

Grandparents play an important role in their child’s and grandchild’s lives—and they can also be a great resource for each other. Once registered for the bulletin board, users can post their questions or concerns and share their wisdom with the group. Topics so far include How to talk about your grandchild, Questioning the diagnosis – why me? and Balancing the needs of the whole family.

We hope bulletin board participants will reach out to each other and make the CdLS journey a little smoother. Grandparents can go to CdLS Connects Grandparents Bulletin Board (http://www.cdlsusa.org/grandparents.shtml) to learn more and register. –MM

Just a quick update on Hiker Jim, the Georgia man walking the Appalachian Trail raising awareness and money for the Foundation along the way (more than $1,000 to date).

 

Jim started his journey—dubbed Walk for Alley in honor of a little girl with CdLS in his hometown—in February. He had a string of bad luck at first and had to leave the trail twice for family emergencies. But, Jim didn’t give up on his dream. He is currently making his way through Virginia, having gone more than a quarter of the 2,175-mile trail, which goes from Georgia to Maine. In the process, he’s done a great job of spreading the word about CdLS. Here’s a heartwarming story from one of his trail log entries:

 

 

11 March 2007: “I arose early and requested a shuttle from Tina, theFontana Village Shuttle Driver the next morning at 7. Because of the Daylight Savings time change that evening, I was 10 minutes late for my shuttle ride and had to wait until 7:20 for a pickup. I am sometimes amazed how things work out and this is just such a situation. When I got in the van and loaded my pack and staff, Tina noticed my “Walking for Alley” shirt and asked about it. I told her about Cornelia de Lange Syndrome and its effects on children. As I did this, Tina reached for her tip cup and handed me all the money she had collected that morning for her shuttle services. She said that she had a daughter who was afflicted with another rare childhood disease and understood what CdLS families were experiencing. I graciously accepted her gift and told her that it would be much appreciated by the Foundation in Connecticut.  I was humbled by this wonderful lady’s generosity and her willingness to give what little she had to the cause. It also raised my spirits that day and carried me across the Fontana Dam into my first day in the Great Smokey Mountain National Park that day”.

 

Safe travels Jim. -MM

CdLS Awareness Day was celebrated around the country this past Saturday. From California to Maine to Florida, families set up CdLS displays outside stores, hung fliers in coffee shops and did a range of activities to spread awareness of CdLS. One dad even set up a DVD player on the counter of the busy gas station where he works and played the Find One Child video over and over.

Here in Connecticut, we held our first-ever Awareness Day Picnic. More than 120 friends and families from New England and New York gathered at a local park on the picture-perfect spring day. US Rep. Chris Murphy, who has been a champion for people with disabilities at the state level and is serving his first term in Congress, stopped by to say hello and meet some of his constituents.

For some families, the gathering was their very first encounter with other children with CdLS. From my perspective, it was amazing to watch their comfort level change throughout the day from nervous and scared, to relaxed and laughing. That’s what the Foundation is all about – bringing families together so they know they are never alone. And it’s so gratifying to see that in action.—MM

PS – Be sure to check out some of the great news articles featuring families and CdLS Awareness Day.

 

US Rep. Chris Murphy with Mary Beth Bruder of UCONN (center) and Julie Mairano, the Foundation’s executive director, at the Awareness Day picnic in Connecticut.

  

Foundation staffers (l-r) me, Janette and Lynn at the CT picnic. (And no, we did not plan to dress alike.)

Enjoying the playground at the CT picnic.