When Ella got her official diagnosis of Rett back in March, our focus shifted. While as of today her course of treatment hasn’t changed, we did suddenly find ourselves belonging to a community of amazingly strong and resilient people. Caregivers and children who were fighting the same battles and who truly understood the everyday struggles that are associated with Rett Syndrome.

As incredible as this was something even more spectacular happened. Statistically, 1 in 10,000 to 15,000 girls are born with Rett Syndrome every year. For that reason, it is considered a rare disease. Through the power of social media and many mutual friends, we were able to connect with the sweetest family in the town right next to ours whose daughter also has Rett. The odds of this happening are as rare as the disease itself.

We had connected before Ella’s diagnosis, as we both are raising special needs daughters, but have been spending more time together since. The first time the girls met was truly magical. They adore each other, and watching them together is the cutest thing. They hold hands, stare at each other, smile, and laugh together. I was always so sad thinking Ella would never truly have a best friend but I am certain she has found one in Skylar.

Our families are on the same journey and there is something so incredibly familiar that we share. If Ella is having a bad day, I know Skylar’s mom will understand the consequences of that. Just having them as a sounding board has been a game changer. When the new Rett medicine was FDA approved we discussed the pros and cons, as well as what the girls’ future may or may not look like being on them. We talk about regression and share tips and tricks on how to make life easier for us and the girls. We share stories of their behaviors and abilities. Skylar is lucky enough to be able to walk but lacks other skills that Ella has. Whereas Ella cannot even bear weight on her legs unassisted.

Even more than sharing about Rett itself, we have also talked about the toll it has taken on our families, what adoring fathers and siblings the girls have, and the community that endlessly supports us. We have had common struggles with failed therapies, insurance denials, and all the unknowns that are associated with the future. We are cautiously optimistic there will be a cure in the girls’ lifetime.

We can’t give the girls a lot of “typical” experiences but we try our hardest. This past weekend we had the opportunity to get the besties dressed up for a photo shoot. Every time I see them together I am reminded how blessed we are that they have each other. Being together is a safe space where we don’t have to explain their disability because it’s already understood. We celebrate them always because these two girls are truly angelic and the best part of us!