Kicks for a Cause

Backstory and How My Fundraiser Works

Kicks for a Cause

In 2011 a disorder that I possibly had earlier became prevalent alongside my Epilepsy. I was diagnosed with Epilepsy straight away and treated by (rather neglectful) doctors who claimed they knew what they were doing in that area. However, my disorder was just labelled what the doctors I had at the time called “an undiagnosable neurological disorder” but I preferred to call it “an undiagnosed neurological condition”. I don’t believe in “undiagnosable”, it doesn’t even have a dictionary definition, because nothing is undiagnosable it’s just “yet to be diagnosed” because you don’t have all the needed diagnostic information available to you yet. My preference to call it a condition was just my youthful, internalised ableism trying to make it sound “less bad” than it needed to and not understanding the differences in words like “disorder”, “condition”, “disease”, etc. in the medical world.

Of course, doctors can’t treat what they don’t understand especially while trying to treat an Epilepsy they’re trying to understand. This was made especially hard as some symptoms of the undiagnosed disorder were, at times, questioned as to whether they were symptoms of my Epilepsy, my disorder, both and if my disorder as a whole was related to my Epilepsy or not. This made treatment near non-existent. Whenever I brought up new symptoms, unless it was possibly to do with my Epilepsy, they stopped paying attention and said it wasn’t their responsibility to deal with that. This led to a dark, confusing and messy time. 

For a period of time, it was believed my episodes of, what were at the time called, “muscle weakness and paralysis” that lasted anywhere from a few hours to a month were believed to be after effects of a seizure as those with Epilepsy can also experience mobility and motility issues before, during and after seizures. If you’re one of those people, please keep following this story.

In 2017 I became the advocate who raises funds and awareness that you know now except back then the only condition that was diagnosed was Epilepsy so that’s what I was known for. This led to me being invited to Epilepsy Queensland Inc.’s awards night as a nominee for the Role Model Award. At this night they had a panel of speakers who spoke on the topic of “positive effects technology is having on the world of Epilepsy” which featured an amazing epileptologist by the name of Sasha Dionisio who I went on to have the pleasure of getting to know. 

He’s now my epileptologist, got my disorder diagnosed in 2018 and got me the best doctor in Australia to treat my Functional Neurological Disorder aka FND. 

The aforementioned episodes of “muscle weakness and paralysis” that were believed to be aftereffects of a seizure are actually a symptom of their own of FND called “Functional Limb Weakness”. They have nothing to do with my Epilepsy specifically however it leaves me to feel a special kind of “empathy via experience” for those who experience mobility and motility issues due to their Epilepsy. 

I previously mentioned that my episodes of Functional Limb Weakness lasted anywhere from “a few hours to a month” but in 2019 I experienced Functional Limb Weakness in my left leg for 4 months and still couldn’t walk on it in the years following despite having sensation back and limited strength and mobility in certain situations. In 2020, for 3 approaching 4 months, the same thing happened to my right leg.

In October 2020 I started intense NeuroPhysiotherapy Physical Rehabilitation to learn how to stand, walk and move on my legs again.

In April of 2021, despite still being in my Physical Rehab program and barely being able to stand yet, I knew I needed to set my ultimate goal up to work towards something more than an idea. So, I reached out to my dream Taekwon-Do and Strength and Conditioning Coach, Trent Hayden, with the goal of the Olympics. I reached out expecting to have to beg to be taken on as a student at all, let alone one with such a huge goal, and would only start once I could walk and move comfortably again.

By May of 2021, I began training one on one in adapted training sessions with Trent with us both working towards the Olympics.

Gradually, while still in the program, I have progressed in my physical rehabilitation over the last few months. I can now stand and walk for limited periods, although still using my wheelchair for extended periods of time, and have progressed my training from solely sitting sessions to a mix of sitting and standing in each session.

I now have fortnightly NeuroPhysio appointments, two Taekwon-Do one on one sessions a week and partially participate in adapted ways in club training sessions weekly.

This brings me to my latest fundraiser!

With the goal of raising a $1000 for each organisation, I plan to challenge myself to do 10 kicks for every $100 raised until I’ve raised $2000 total.

Whilst I would like to raise equal amounts for each organisation, it’s ultimately up to you and your choice which organisation you donate to, or you could split your donation between both.

To donate to Epilepsy Queensland Inc. please donate via the following link and I will see it and be notified of your generosity straight away: https://myimpact.epilepsyqueensland.com.au/fundraisers/ReneeWilliams/kicks-for-a-cause?enref=477ce2963bd1bd6c29c0f1fd61d66945

To donate to FND Australia Support Services Inc. please donate via the following link and notify me with a screenshot of how much you donate through a message at ‘Purple Adventures Blog’ on Facebook, @PABlogOfficial on Instagram or email me at KicksForACause@hotmail.com so I can keep track of how much has been raised and how many kicks to do:

https://www.paypal.com/donate/?cmd=_s-xclick&hosted_button_id=55Y2TAK9HGUES&source=url

FND Day is March 25th (please wear orange on this day) and Purple Day for Epilepsy is March 26th (please wear purple on this day) so I will be completing my Kicks for a Cause in March. These kicks, especially this quantity, are a challenge for me however I have decided to keep it challenging yet safe, not wanting to push myself too far or do anything dangerous, I will be breaking these kicks up into however many kicks I’ve raised for each week and be doing them in the company of my coach at training every Tuesday of March.

For example: if I’ve raised $500 by Tuesday March 1st 2022 I will do 50 kicks after I’ve finished my usual training load for the session. I would then do 10 kicks for every $100 raised by the next Tuesday training session of March.

A video update will be uploaded to my socials after every Kicks for a Cause session.

If we’ve beaten the $1000 goal for an organisation by their designated “Day” (March 25th for FND Aus Support Services Inc. and March 26th for Epilepsy Queensland Inc.) I’ll do an extra 10 kicks for every extra $50 raised on the designated day.

Everybody who donates a whole $100 themselves will get a custom poem written about anything, anyone, or any time they want, presented on a visual background.