I am so excited to run the Disney Princess 2020 on behalf of my sweet daughter, Lilliana. She was born on December 9th 2013, a reasonably healthy baby girl. Or so we thought...

At 13 months we noticed that she wasn’t progressing as she should so we began the early intervention process. Once we realized that walking wasn’t going to happen without lots of PT we began to look into genetic testing and got a diagnosis of WS shortly after that. We thought that was it, this was the cause to all of our issues. Unfortunately, that was just a small part of our problems. Around the time of her third birthday she began to slip away. She stopped progressing and instead started to regress. She stopped playing with her toys, lost the small amount of words that she did have and then began wringing her hands. We got her diagnosed with autism shortly after that and moved forward. As her Mom, I had a gut feeling that WS and ASD wasn’t all we were up against and there was something bigger at hand. In July, her breathing started to become erratic and she started to fall a lot more than usual.  Then in August she had suffered from multiple focal seizures. After some more visits with neurologists, neurophysiologists, developmental pediatrician, trip in the ambulance and admitted to a hospital, we looked into further genetic testing. Then on September 29, 2017, we finally found our answer! Rett Syndrome is now part of our vocabulary. It wasn’t the life that we wanted or would have hoped for but this was it. Our new life with Rett syndrome. 

Once we got over the initial shock of her newest diagnosis, we began to research. We reached out to local charities in the UK and we researched charities in the states that could help provide assistance. One of our favorite charities that we have come across in the states has been Girl Power 2 Cure!! They work together with multiple other charities and provide parents, carers and our girls/boys with information and hope. All the proceeds go towards research for the cure and educational resources for our kiddos with complex needs. 

We never would’ve thought this would happen to us but it did. Our baby girl is battling a much harder life than we ever could’ve imagined. She struggles daily to do basic functions like eating, breathing, walking and using her hands. We could choose to sit on the sidelines or we could choose to fight. We chose to FIGHT!!!

We FIGHT for her needs!

We FIGHT for her education!

We FIGHT for her health!

We FIGHT for her FUTURE!!!

We FIGHT for her and every other child with Rett Syndrome! We are living 4 Lilliana!!!

Please help us in our FIGHT!!! Let’s CURE RETT together!!!!!