The Reality of Rett Syndrome

Sharing a guest post by my friend, Lisa. Her daughter, Lily lives with Rett Syndrome, a very rare condition that predominantly affects girls. This mom & daughter duo are real fighters!

Have you participated in the Facebook challenge where you compare your first profile pic to your most current one?  My first picture was of Lily and me. In this picture she was 3 months old. We spent a little over a month in Hawaii swimming and walking all over the island of Oahu. Life was sublime.

Little did I know then that our life was going to change in ways that I could not fathom. Lily was diagnosed with Rett Syndrome a severe neurological disorder that robs girls of their ability to walk, talk and have purposeful use of their hands along with a myriad of other challenges.

Lily has always been a fighter. We almost lost her when I had to be rushed in for an emergency C-section. She wasn’t breathing and was in the NIC ICU for the first few days of her life. Here we are 11 years later and she is still fighting! She’s strong. She’s so smart and she has come so far. She has fought for every ounce of mobility that she has. Countless hours of physical therapy, tears, tantrums and triumph!

This past year she accomplished walking independently in her walker, on a daily basis, the length of her school and back.  Recently, however, Rett Syndrome has raised its ugly head again and her scoliosis has become severe, which is causing her pain when she walks. We're seeing a specialist. The battle continues but we won’t give up. 

Lily works so hard. She inspires me, makes me laugh and blows me away with her patience, intelligence and abundance of love & true joy that she not only shares with me but to all of those around her. She is my hero, my teacher, my inspiration, my heart.

Hey guys, if you want to learn how you can support Lisa and Lily in the 2019 Disney Princess Half Marathon Race, click here. Let's fight for a cure!