Little Lilly vs Rett Syndrome

About Little Lilly,

Hello, my name is Lilly, I’m 8 years old and i live in Whangarei.

I attend mainstream school and my best friend is Dimeena and my doggy Cable. I love to explore and in my spare time I like to go the beach, walks, swimming, fishing, kayaking, camping, riding a horse, bike or motorbike, and spending quality time with friends and family.

At the age of 7 years i was diagnosed with RETT SYNDROME. This is a progressive, degenerative and non-curable, neurodevelopemental disorder that displays a combination of serve symptoms. I will now need extensive input, therapy and support for the rest of my life

This has now meant i have limits and can no longer run or talk. I cannot walk, eat, sleep or breathe properly and i continuously suffer from muscle spasms and dehabilitating pain. Although this Diagnoses is life changing, my mummy and i try really hard to accomplish day-to-day living and accomplishments.

My Muscle Spasms are the most annoying, as they are very sore and frequent, morning and night. Being active helps regulate her muscle spasms, is one part of my Alternative Medicine Plan. I would like funds to support my mummy and me in efforts to lessen my pain and excite my shortened lifestyle.