Little Lilly v Rett Syndrome

Normally born however i was diagnosed with RETT SYNDROME at the age of 7. This is a progressive, degenerative and non-curable, neurodevelopmental disorder that displays a combination of severe symptoms. For me, that meant from this day forward I was forced to conventionally medicate. Unfortunately, 1½ years later, this triggered my unknown dormant diagnosis, forcing me to now suffer from consistent debilitating muscle spasms and seizures and left to fight an uphill battle.

This has now meant I have limits and can no longer run or talk. I cannot walk, eat, sleep or breathe properly and 1 symptom I suffer from is continuous painful debilitating muscle spasms and seizers every second of everyday, morning and night, asleep or awake. Through a long journey I am healing, with every decision made, extensive support and therapies for the rest of my life. Although this diagnosis is life changing, mum and I try our very best to live every day to fullest whilst having fun doing so!

Movement and being active helps regulate and lessen my annoying painful consistent muscle spasms and is 1 aspect of my Alternative Care Plan. Another, mum would love the opportunity to buy a hydrotherapeutic spa pool to use, when needed. Providing further therapy, relief of my painful muscle spasms, improve blood circulation, calm the lungs to breathe easier, maintaining critical body alignment to prevent early-onset regression or and other diagnoses. Ultimately assisting the body’s natural healing processes.

xo