Let’s Do It for ME co-founder Paul Kayes’ amazing sister Amanda and her husband Richard are doing a great job raising awareness and funds for Invest in ME Research with several events planned – their biggest being the ambitious task of climbing Kilimanjaro.
Amanda and Richard’s Story
For some time now we have been thinking about what we could do as a big personal challenge that could result in making a difference to others. We have decided, in our wisdom, to climb Mount Kilimanjaro in March 2016 – a 7 day trek to reach the 5895 metre summit of the highest free standing mountain in the world and the tallest mountain in Africa.
As Amanda really doesn’t like walking (or sharing smelly toilets!) and Richard is afraid of heights, not withstanding the difficulties of altitude sickness and 8-12 hour treks per day, it should indeed be quite a challenge!
We are doing this challenge in order to raise money and in particular awareness of a small independent UK charity very close to our hearts – Invest in ME Research.
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Every penny will go to the charity!
Why this charity?
Well in 2002, Amanda’s brother, Paul Kayes, was struck down with M.E. (Myalgic Encephalomyelitis) following a virus. He was very fit, active, had a good job, a loving wife and two children, yet this illness showed no mercy as it gripped his body and as a result, for the last 13 years he has become virtually housebound and most of the time is confined to his bed. His only hope is that a cure for ME is found.
Invest in ME is run on an entirely voluntary basis by sufferers and parents of children suffering from M.E. Every penny they receive goes towards finding the cause and cure for this horrible illness whilst also trying to educate health care organisations and the public.
Their most recent push is to raise funds for Biomedical Research into ME and have already laid foundations for a UK Centre of Excellence for ME Research. We want to help them take a step closer to reaching their goal, so that one day soon, a cure can be found to help Amanda’s brother, and other sufferers, to get their lives back. We also want people to understand more about M.E. so its sufferers don’t feel so misjudged.
So, what exactly is ME?
ME is a debilitating illness that affects 250,00 people in the UK (a prevalence higher than HIV or multiple sclerosis) and around 17 million worldwide. 25% of sufferers are severely affected to the point they are effectively house or bed-bound. 10% are children. There is no cure. Even the cause is unknown, as so little research has been funded to date, although it often follows a viral infection.
ME is thought to be primarily a neurological disease with symptoms such as extreme physical and mental exhaustion, muscle weakness and paralysis, joint pain, head pain, blurred vision and severe dizziness or blackouts, vertigo, insomnia, respiratory problems, noise and light sensitivities, cognitive impairment, digestive problems and a host of other symptoms.
ME doesn’t prey on the weak, it can hit anyone…..strong men, active women, healthy children….at any time. It can last anything from a few months to a lifetime. It can kill. Sufferers feel misunderstood, misjudged and isolated.
Pictured is a young girl called Merryn. She suffers from severe ME, having been struck down with it aged 15. She was an active teenager, loved school and was part of an acting and modelling agency. Now she is bed bound, in constant pain, needs 24 hour care, is unable to walk talk or swallow and has been diagnosed with intestinal failure. Doctors fear for her life, yet Merryn continues to fight and supports other ME sufferers as well as raising awareness through Invest in ME. This is only one story.
These people need our help… and to know we care.
Don’t just take our word for it. We asked some ME sufferers to try to put into words what it’s like to have ME and what they would like people to know about how they truly feel.
This is what they said:
“It’s like you have been injected with a deadly poison, where every part of your body feels like it’s slowly shutting down. I feel trapped inside my own body, often wondering how I can be so ill yet still be alive, and yet the medical profession has no answers.”
Hayley Green 27, sufferer for 8 years.
“It’s like someone pulls the plug and you are left to function on whatever dregs of low battery you have left. In other words, running on empty. It feels like life as you know it is over, you become a spectator of life and not a participant. It is a very lonely illness to have with little support from the medical profession.”
Nicola Lavin 37, suffering for 14 years.
“It’s like having the worst flu every second of everyday, like your whole body is made of lead and just being able to get out of bed everyday is an accomplishment for me. I feel so scared for the future because the medical profession don’t even acknowledge this illness as real. It is real, very real…. it’s a living hell.”
Jade Thomson 32, sufferer for 3 years.
“It’s like walking a tightrope over hell, trying always to manage a condition about which no one really cares whilst every morsel of your skin burns and every nerve cell writhes and bounces against every other nerve cell and you just hope like crazy you can hold on. After so long I just feel utterly mentally exhausted. My mantra now is ‘ we need help, not hope’. I’ve been ‘doing’ hope for 45 years. That’s why people who have their health and can raise funds for bio-medical research mean so much to every one of us with this condition because they bring that ‘help’ a step nearer. Their steps lead directly to our steps…”
Rosie Cox 52, sufferer for 45 years.
These and further quotes feature on
Amanda & Richard’s leaflet
Also available on their webpage.
As part of their fundraising and awareness drive Amanda and Richard hosted a wine tasting competition on Saturday with 90 guests and raised an intoxicating £1470. Amanda’s brother Paul, who has been laid low recently and was greatly missed, shared news of the event to our Facebook page Monday.
I don’t know if I’ve mentioned about my wonderful sister and her husband who are doing a fantastic job raising awareness and much needed funds for Invest in ME’s biomedical research strategy. Well on Saturday they had a wine tasting competition with 90 guests and raised an incredible £1300 (see photos below)
Richard pictured in the IiME t-shirt, Amanda in orange Kilimanjaro hoodie (you can even see the back of Amanda’s mum Ann, who slaved away in the kitchen till 11.30pm)
Amanda wrote at 01.43 ”Just climbed in to bed!!! Very long night but it went well and now everyone knows the truth about ME and were very supportive in their comments and donations. I think we have raised around £1,300!!”
Of course the main event is still climbing Kilimanjaro and you can read the leaflet they created for this event here.
You can even go mad and donate if you want, not just because it’s my sister, but because we need the research 🙂
I justppen to come across this. Trying to explain to a friend how the last 18yrs have been. I’m now 41yrs old. Every single part of my body has been affected. I have chronic spinal meningitis. About 1-2 times a yr. I don’t even go to the hospital anymore for it. I’d rather suffer at home than deal with such emtional abuse. Now I’m not even on any kind of pain meds. I’d rather take my last breathe here.
I’m speechless, as I sit here and just cry! Not for myself, but my husband, stepson & 3 kid’s. To me, that’s what sucks the most! My daughter, getting ready to be 22, a Sr at Purdue. I’ve been to the campus one time, ONE! That was her freshman year. All the sports she was in during high school (which was a lot), she didn’t see her mom cheering her on, or at all her award ceremonies. She doesn’t really remember when I was able to drive, when I was “healthy”. She and her fiancé, Doug will be moving (after interviewing and being accepted to all ten colleges he interviewed) to Wisconsin for dentistry school. Our son, 19, has been a handful & in quite a bit of trouble growing up. Causing so much more havic and stress on everyone. Failed out of school, only lasting in high school a week! Now, I sit here thinking of the havic and stress on a little boy’s mind, how his mom is there one day, in bed the next. More & more. Not able to go to his football games when he actually played…and he was a natural, just like his Uncle Mike. He got his G.E.D. He’s finally turning around, realizing how much he is loved. It’s not his fault, nor is it mine. He has our first grand baby on the way. January 28th (which, now is today) we’ll be finding out if it’s a boy or a girl♡(BTW..ITS A GIRL♡)..Very exciting. I know he’ll be a great daddy. Our youngest, 16yrs old, sophomore at BG (as both of our parents, Eric and myself). She’s so funny, cute, spunky, very active, has been in many different sports. Makes good grades, has her license. A very talented artist in many different ways. I know she has a great future ahead. Eric & my brother would be in bands, playing out, my seat started being empty more & more! Eric started playing for The Great Banquet at one point, I couldn’t be there to support, encourage, listen & just enjoy him. 18yrs later how that loving man still stands by me♡ When each tear falls, it isn’t about me. It’s so easy to say, you can’t feel guilt, it’s not your fault. I don’t my know how a loving mother and wife could feel any other way? My seizures started 6yrs ago. Finally, knowing they can go with this very complicated disease. Your life is literally lived hour by hour. At least now, I do know what it is. My dad has been sick for 20yrs. They’re seeing that genetics can play a role, but it’s usually set of by a virus (my dad, aunt & myself all had chickenpox twice times). My aunt, the baby of the family, was only 49yrs old when her death was put accidental overdose. I know in my heart that was never the case (ya, she was on to many meds) but with M.E. I’ve also learned our bodies react differently to chemicals. Her 3 children have no clue. Her only daughter having to bury her mother on her own daughters 1st birthday. My dads other sister, 100% bedridden, diagnosis, MSA. His mother, we all thought she was crazy, how horrible I feel now, but I now get it. I don’t ever want one more person to be made felt like they’re “crazy!” Actually, I’m crazy in a good way. Who wants to be normal? There’s seasons for a reason, if we don’t keep changing ourselves, we will fall into one season and be stuck there! I may be in this bed a lot, but I make the best out of it. Choosing to fill myself with laughter, positive thinking as much as possible, but most important, Jesus Christ as my Lord & Savior! Paitients, loved ones & friends can now read on paper how others have gone through the exact same things. Never knowing why, never having answers. Just woke up one day to a different ME! Now I’m figuring out who that ME is. I haven’t been having to use my wheelchair as much. My seizures have gotten less & less. My mind is usually hyperactive, now my body can follow more. How relieving when you read; your mind will be hyperactive, but your body so fatigue! It doesn’t matter what you try, you’re stuck there. How do you try explaining that to somebody? You don’t even understand yourself? You think it’s you, nobody else. Now, I’m reading it. Why I can’t speak in sentences anymore, pronounce words, spell. I’m understanding how it affects my brain! Telling something 20 times, thinking it’s the first. I will seriously forget writing this. But the great news is, I’m strong, I’m a fighter, I’m stubborn & I like to achieve greater things. I’ve been able to get out a little more. I carry earplugs with me, I found noise is now a hugh trigger for my seizures (my husband & brother being musicians..haaa). God does have a sense of humor 😉 He has a reason for everything, I’m getting ready to finally find out mine. I feel the Spirit working in me. My mind just keeps getting blown away, reading the littlest thing. How refreshing will that be to another suffering, who hasn’t had understanding or support? Not little, I guarantee. I’m so ready if this is my mission, and hopefully putting smiles on so many faces♡
My mission, to the best of my ability, is to let those people who may or may not have support systems, that it’s going to be ok. I understand, not only because of the the compassion I have, but because, I TOO LIVE IT♡