When Rare Isn't So Rare

We've been fortunate enough to meet children with CDG-PIGN in the past, as there's a family a couple hours away near Chicago whom we've visited twice. We also met a family in Maryland when we visited the National Institutes of Health last year. There's something incredibly special about meeting another family who instantly understands the struggles, challenges, joys and fears of your life with your child's rare disability. When there's fewer than 100 known cases in the world (and that's a generous estimate), it's pretty incredible to connect our families in person.

We had that opportunity again last week when we visited Florida for a family Disney vacation. (More to come when I have time on Disney as well as our life-shaking seizure that happened there.) We were actually hoping to meet two different families, but one was tied up with mission trips and a hiking trip to the Appalachian Trail (with her 17-year-old son with CDG-PIGN - talk about amazing!). I'm so grateful we had the chance to meet Vivien and her parents, Heather and John.

Vivien is 10 years old and lives about 40 minutes away from the resort where we stayed, so her parents ventured to meet us at our resort. Vivien was a bit shy at first but warmed up to enjoy some time on the playground, as well as in the hammocks. Her favorite, though, was when they visited our room and she could have all the pillows. Pillows are one of her favorite things, and it was so fun to see her snuggle into them with AJ and Teddy joining the mix.

Although there's certainly differences between the children with CDG-PIGN, there's striking similarities in their smiles, certain gestures and certainly their ability to manipulate their parents without saying a word. Vivien tried out Teddy's backpack carrier to see if it was comfortable for her as well as easier for her dad to carry her. She's petite for 10 years old, but she's still 10 years old and loves to be carried because she feels safe and secure in her dad's arms, not to mention that it's a lot of work for her to walk. Teddy and Vivien also checked out each other's wheelchairs, which was kind of fun. Teddy had to give Vivien a ride in his chair because he never stops moving and loves pushing and pulling people and things.

Both Teddy and Vivien were intrigued by each other.

We only visited for a couple hours because we flew in later in the afternoon and wanted to meet before our planned adventures for the week. But that time together was so precious, so incredible and left all of us smiling. Even neater was that Dave's parents got to meet another family like ours.

All the Disney magic aside, the meeting of our rare kiddos was one of the most magical moments.