Breaking Down Barriers - Millie's Mission

Hi everyone,

My name is Millie and I am 6 years old. I have Rett Syndrome and Epilepsy but I don't let that stop me. Mummy and Daddy are very proud of me and say I am a brave princess. I love to play with my little brother and friends and go on days out. I am always smiling - Daddy says I have a cheeky grin and an infectious giggle. My favourite place is Peppa Pig World! I love Peppa! I love to go on rides and swing and slide! I am a little thrill seeker.

My Rett Syndrome means that I can't walk on my own. I need the help of my Mummy, Daddy, my walker or a hoist. I really want to have ABR therapy to help my brain talk to my muscles better so that I am more comfortable and stronger in my core. I need to strengthen my back and core to help reduce the risk of scoliosis when I am older. I hope that one day I will be able to stand and take some steps all by myself. 

Rett also means that I am non verbal. My voice doesn't work the same way as yours does but don't let this fool you I can be noisy and cheeky in my own way and I make sure my Mummy and Daddy know what I want - it's usually to watch Peppa Pig! I use my eyes a lot to communicate and I am learning all the time with an eye gaze system at school but I would really love my own so that I can learn new words, talk to my family and friends and play games. I struggle to use my hands, I used to love grabbing and picking up toys when I was little but my Rett syndrome meant I lost that skill and now I find using my hands really hard. Mummy, Daddy, Nannie, my teachers and friends have to help me hold things and use my hands for fun things like painting and play dough.

I still have quite a few seizures because of my epilepsy but my doctors are working hard to try to find the right medication so that I can hopefully be seizure free and spend less time in hospital. They make me really tired when they happen which makes me feel sad.

As I grow into an adult, I am going to need lots of support with therapy, equipment and adaptations so that I can continue to live my best life. 

Please help, if you are able to, so that I can have the best chance in life. With your help, I might be able to realise my dream of learning to speak some words or walk some steps independently. I love to achieve things by myself! One day I would love to walk to the park holding my Mummy and Daddy's hand. Thank you for taking time to learn all about me and thank you for your help!

Lots of love,

Millie ❤