My heart is full

Hey friends!

Hope you are doing well!  2 more days and we are on Spring Break!  All school alarms will be turned off,  we can sleep in, no schedule and a lot of family time.  We are splitting our time at the lake house and 3 days in Chattanooga.   We have a few planned activities in Chattanooga, but we will wing most of it.  I am looking forward to no laundry, no cooking and no cleaning.  Watch my stories next week for all the fun and full trip report soon.

As you know, or if you are just getting to know me, my 15 year old son Riley has Cornelia de Lange Syndrome – CdLS for short.  He was born with this rare syndrome that affects 1 in 10,000 births,  but we did not know until he was 17 months old when he was diagnosed by a developmental pediatrician and then later confirmed by a Geneticist.  To learn more about Riley’s journey go here: Riley

Last weekend I hosted the bi-annual family gathering for the CdLS Foundation.  Being a Regional Awareness Coordinator in GA for the foundation, I have been hosting this gathering for years.  It’s a time for families to connect and learn from other families that have traveled down this path and to gain new friendship’s with kids like their own.  What makes me most happy is hosting this to help these families by bringing them together and know that they are not alone.

In years past, I have hosted the gathering as a potluck at a church.   This year I wanted to do something different. With the help of Facebook, I put a post up and found that Slopes BBQ in Sandy Springs  (ironic we have used one of their locations in the past to cater a few Brew & BBQs)  was a good central location to meet and eat, of course.  I went down there to check out the room and it was perfect!  They had corn hole for the kids and a band that comes in on Saturday afternoons.  It was perfect and a good central location.   I contacted the foundation and they sent out an email to the Southeast families with a follow up invitation.

With CdLS being so rare, we have about 50 families in Georgia.  About 40 people attended and we had a fantastic afternoon.  Some of the families I have met over the years and some were new.  Some traveled hours from Alabama and some from only 10 minutes away.  The age range of the CdLS kiddos was 5 months to 26 years old.  These kiddos are so special.  Just look at how beautiful they are 🙂

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Thank you to the CdLS Foundation for always being there to help connect our families.  Thank you for the services and support you offer for our families. And Thank you for always  Reaching Out, Providing Help, and Giving Hope!  ~ The CdLS slogan

A big thank you to all the families that attended. I enjoyed seeing everyone and gaining new friendships. My family is always here to listen and help as you travel this little known syndrome with support and lots of love.

And a Big Thank you to Glenn at Slope’s BBQ in Sandy Springs for your fabulous food and hospitality!

I challenge you to watch this 5 minute spotlight on CdLS that was aired on PBS where the foundation was able to reach a national audience and share their story.

Thank you for taking the time to read my post and watch this video. It means a great deal to my family.  There are approximately 30,000 people without a diagnosis of CdLS.  By spreading awareness of CdLS, the foundation can help these families navigate the syndrome and get help that they need.

XXOO,

Fran

The post “My heart is full’ first appeared on Busy Fit Mom Life 

 

 

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