A bit about me ..
My name is Aimee but my life story name is Sparkly Green Warrior, why you may ask because without sparkles life would be dull, boring and hard. You can find my full life journey story on Facebook and Instagram under Sparkly Green Warrior. But I’ll write a little hint of how it’s like living with mito here ..Although I’ve had mitochondrial disease all my life, and I didn’t know about it , many years of my life it was just put down as simple things like poor coordination skills. Before my grandad passed away, we found out that he had mito and that my mum also had it. Then of course I was told I had it after tests when I was just 19 years old.
When things really started to get hard, I was a dancer, ran 5/10km marathons, and second year nurse student. I suddenly lost all the things that I love doing, and my career It felt like just a click of a finger, and my life changed. Within 6 months I lost all my hearing, I was deaf. Now my symptoms include blindness (optic nerve damage), migraines daily, speech dysarthria, muscle weakness and spasms, deaf, Cold intolerance, chronic pain, scary heart rates, high blood pressure sometimes, asthma, bladder retention, painful bladder syndrome, stroke like symptoms , droopy eyelids (ptosis), hallucinations, child mind, and more. This year I have been diagnosed already with more progression FND seizures and I will also be getting surgery for a Suprapubic catheter becoming a permanent tubie.
I’ve had to adapt by changing my life to suit my disease, which is of course challenging at times in our limit is some days. I have support workers from 8 am to 8 pm, my fiancées help, service dog (Teddy who’s retiring ) plus a prospect service dog (Phoenix). I won’t give up this fight and also fight for those who are suffering like me or who we have lost. We are warrior we will fight together.
My aim is to now raise awareness and funds as we have no cure so my first market sharing my story etc is 13th April at Kingston butter factory 7am-12
I'm raising vital funds for mito!
I’m fundraising to help the Mito Foundation support the mito community whilst seeking a cure. Mitochondrial disease (mito) is a rare
The Mito Foundation provides information and support services to connect mito patients and their families to help them feel less alone while funding research to develop meaningful treatments and cures.
You can help too, by donating to my fundraiser. Together we can create real change for the mito community.
Thanks!
You keep fighting my Mito twin 💚 I wish I could donate more! Lola