2019 CLS Family Gathering – Fayetteville, NC

2019 COFFIN LOWRY SYNDROME FAMILY GATHERING – Kristi and James Smith, 2019 Host Family

The 6th annual USA CLS Gathering was held in Fayetteville, NC, hosted by Kristi and James Smith and their sons, Tim and Anthony. The Smith family shared with our families the different types of sensory and adaptive activities that their community provided to kids with physical disabilities. This was our largest CLS Family gathering to date with 33 families attending. The kids in red t-shirts (group photo above) have CLS. The ones in blue are their support group, the siblings!

As with most gatherings, Thursday we welcomed 33 families from all over the US, Canada and special guests Juanita and Lance Steenveld, their two sons Cayden and Tristan and parents all the way from Cape Town, South Africa. Friday was a wonderful day of introductions, round table discussions of topics from toileting, fine motor, feeding issues, being a cls grandparent and many more. And we can’t forget the wonderful massages given by a local massage school for both adults and our CLS guys that
had spinal issues. All while our kids enjoyed puzzles, games, and played the wii with wonderful volunteers from the Smiths special needs community.

Saturday, we were welcomed to the AMC 14 movie theater for a sensory viewing of Toy Story 4 with lights on, volume down. We had the whole theater to ourselves and the kids were able to sit where they wanted. Later that afternoon we enjoyed our traditional dinner with dancing, games, photo booths, Frozen characters from the local dance studio and lots of socializing and bonding.