My name is Éabha Wall, I have Cerebral Palsy, and I want to become bionic.
Today, Friday 6 October 2017 is World Cerebral Palsy Day , a condition I was diagnosed with 20 years ago, aged 2
Cerebral palsy is a broad term used to describe a range of conditions that affect movement and coordination. The condition arises on or shortly after birth and is one of the risks associated with prematurity, as in my case. I was a twin born at 28 weeks, weighing 2lbs 5oz and spent the first 3 months of my life in a special care baby unit in Cork, 2 weeks in the company of my twin sister Fionnuala, who sadly didn’t survive.
I was born determined and my life so far seems to bear that out. I have been a cub scout, done swimming, canoeing, horse riding, sit-ski, even standing in goal for the under 9’s (the competition were stunned to see my spectacular dives in goal, and even more stunned to see 3 teammates running into goal to bring me to standing afterwards) Even now I have the falling with style thing down (at one with my inner Buzz Lightyear).
At school I was inspired to pursue science at college and I am finally in my 4th year Biochemistry, although not without some struggles. It’s a tough course for a completely able-bodied student, not to mention my 5 ft 0” ‘physically challenged’ self, which brings me to my fundraising request:
I have been accepted as a suitable candidate for the Exosym, a new piece of technology that could help me walk better, and improve my quality of life.
While CP is described as non-progressive, gradual wear and tear on muscles and joints has taken a toll on my body. Day to day tasks and physical activity now require way more effort than before. Having CP means you use 3-5 times as much energy and fatigue is inevitable. Where once my wheelchair was reserved for long journeys, now I can't go anywhere without one. Anti-inflammatories and painkillers are now a necessity. I know that medicating my way through pain cannot continue without doing lasting damage.
In my search for a medication-free alternative, I have discovered the Exosym, a device that would compensate for the weak muscles in my legs and ease the stiffness and pain in my joints. The idea is to mechanically align my hip, knee, and foot to increase the smoothness of my stride and allow me the freedom to access muscles in my body that have been dormant my entire life due to my brain's functional inability to make those important motor connections. I have seen what ExoSyms have done for people with similar disabilities and disorders. I’ve spoken directly to ExoSym users who say it has dramatically reduced their pain levels and improved their stamina.
ExoSyms won’t magically take away my CP, but if they could give me even 10% of what they have done for others, I’d see that as worthwhile progress. Of course, I hope for much more. Poor mobility and instability will impair the contribution I could otherwise make as a scientist. The stability that these devices could provide would make laboratory work much safer. I’m studying Life Sciences because I want to help other people. These devices can help me reach my potential to help others reach theirs.
Above are videos of Katy Fetters, 24 with spastic hemiplegic Cerebral Palsy, in the latter she has been 4 months with the Exosym.
The Exosym was created by Ryan Blanck, based in Gig Harbor, Seattle, Washington. The cost of the device & knee section is $10,787.50. I need one for both legs making a total of $21,575 (€18,500). This pays for the evaluation, casting, fabrication, fitting of the test devices before completion of the finalized devices, followed by functional training, and adjustments as necessary. I would need to travel to Seattle in the US for 2 weeks. I hope to do so in January 2018. I have budgeted €2,500 for flights, accommodation, subsistence and local travel for the trip. So, I’m looking to raise some money towards the overall cost of €21,000.
I am not expecting miracles. I don't expect to run marathons, I simply want to live a life without pain, and free myself from some constraints that my disability brings. (Think less Usain Bolt, more Forrest Gump)
I wish to live my life to the best of my ability, and these Exosyms could grant me this.
Any support that you could provide: donating €5, €1, or even sharing this link would make all the difference in the world to me. I would love, should this work out for me, that I in turn could help somebody else benefit from an Exosym, even if only to inspire somebody like me that there are options.
Thank you for reading.
- L B R
- Maura McStay
- UCC Chemistry Society
- Sinead Ní Dhubhda