About my baby girl Luna

The story of Luna

This is Luna. She’s 4 years old. Since she was born we noticed that things weren’t “normal”. She was born with her eyes crossed and cried a lot in car seats in baby bouncers and even just laying her down has always been hard. Little things that “normal” kids are ok with seem to scare her. She eventually needed glasses and eye surgery. When she was about 6 months we noticed she wasn’t able to sit up and that’s where it really started with doctors and eventually by 10 months therapists and specialist where involved. Now fast forward to now she only been diagnosed for about 8 months with a rare genetic disease called CTNNB1.

Physically and intellectually my daughter will always be behind. She also has low muscle tones and speech delay and she gets scared easily. It was a relief to finally have some answers but at the same time hearing doctors tell me that because it’s rare they still don’t have much information and i would probably get more help from other parents and kids dealing with the same thing has been hard. Even though my daughter will always have obstacles to overcome I believe in her and have witnessed in the past everything she’s overcome. She doesn’t give up and just wants to be like other kids. Even though she does things in her own way she still has been able to walk talk learn and is just so happy. I know she is not ever going to let this define who she is or stop her. I’m just so proud of her. I love you my little Luna…. The sky is your limit❤️

*Find others with CTNNB1-Haploinsufficiency syndrome on RareConnect, the online platform for people affected by rare diseases