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FARAFARA Cure FA

Spotlight on Iain Fryatt

I stumbled across Iain on Twitter. His handle is @IainsKiliTrek. This made me wonder what his Kili Trek was. So I checked out his Twitter page. Well, what I found was that Iain is awesome. He has FA and uses a wheelchair and climbed Mount Kilimanjaro.  I had to find out more. It follows. It is not hard to tell that Iain loves life as much as he loves a big challenge. 

First can you tell us a little about yourself: Where do you live? How old are you? How old were you when you were diagnosed with FA? Do you have siblings? Do any of them have FA?

I live in Erith in Kent England, a suburb of London. I am 28 years old. I was diagnosed with FA when I was 9 years old. I have two younger brothers Callum and Craig. Both have been tested and neither have FA.

So Mount Kilimanjaro, what made you think of climbing it for a fundraiser?

My Dad has done a couple of charity treks to raise money for research into FA. My two younger brothers were wanting to accompany him on his next one, which was Mount Kilimanjaro. We bought a mountain trike, www.mountain trike.com, as a means to get out of the house more and exercise. When we read that people had used the trike to climb Mount Snowden, in Wales and Ben Nevis in Scotland, it seemed to us that the logical next step should be that a trike should be used to climb Kilimanjaro!!

How did you train for it?

I already had a personal trainer at my local David Lloyd Gym, Ryan Burns, so he started to provide me with more specific exercises for the trike, posture, core strength and arms. I visited Prime Physio in Cambridge, www.primephysio.co.uk, who is a physiotherapy led rehabilitation centre for people with SCI and other neurological conditions. They reviewed how I would be using the Trike and set up a programme of physiotherapy to help. I also had regular sessions with an osteopath, Nell Patel, who helped improve my posture whilst using the trike. I also went out on regular runs with my Dad and his partner Karen, to local country parks, to get a feel for using the trike off road.

Did you have a team? Who  were they (and how were they related to you...friend, sister, etc) How did they help you? How did you help them?

The Adventure was called Iains Kili Challenge, with anyone who got involved becoming part of  Team Iain. Apart from those mentioned above, the main members of Team Iain, those who accompanied me on the trek, were, my Dad, Graham Fryatt, his partner, Karen Servadei, my two younger brothers, Callum and Craig, my cousin Billy Davis and Dr Nick (Nick Haslam). Karen helped with sponsorship, fund raising, publicity and organising the whole thing! Billy assisted with publicity, in particular social media. My Dad and brothers helped with my exercise regime.

We approached Dr Paola Giunti and her team at the Ataxia Clinic at UCLH for advice on what affect, if any, the climb would have on my condition. They arranged a series of examinations with relevant Consultants, cardio etc, who confirmed that I was able to take part in the ascent. They also recommended that I should take along a specialist in Mountain Medicine, who could monitor my condition, in liaison with them, which is how we met Dr Nick Haslam, who soon became affectionately known as Dr Nick.

Was it daunting when you got to the base of the mountain? Did you want to turn around or were you like: "finally bring it on?"

I think the best answer to that is a quote Dr Nick used in an article for the Adventure Medic online magazine . He describes how, when he met us for the first time at Heathrow Airport, he was reminded of a quote by Charles Kettering "... all believed and acted as if it was impossible to fail ... !!” We knew that we were going to do it!! Each day it appeared that my condition improved, and with the excellent help and support we all got from the Lead Guide, Joshua Rhuhimbi, and all his colleagues of Team Kilimanjaro, www.teamkilimanjaro.com, all I had to do was enjoy myself !!

The only blip was that Dad assured me that the terrain I experienced off road in the Country Parks would be exactly the same as on Kilimanjaro ... it wasn't!!

You had a special wheelchair, right. How was it special?

It has been developed along the lines of a Mountain Bike, to enable wheelchair users to go "off road", and it works!! What did it feel like once you reached the summit? (What an accomplishment!!)

I know you said you could see the horizon, how the earth rounded. What else could you see?

Despite what I said earlier, I just couldn't believe I had done it, when we reached the sign at Uhuru Peak, it was such a rush of feelings!! I did feel on top of the world!! Other memories was seeing the glaciers, (one just like the Fortress of Solitude!!), and the fact that we were above the clouds.

Going down a mountain in a wheelchair sounds scary to me, was it? How did you do it?

It was like an amazing fun fair ride. The side of the mountain is scree, so essentially we were skiing down, with the porters holding on to ropes tied to the trike. The Lead Guide kept shouting "Zig Zag" but we didn't !! Brilliant fun !!

How long did it take, up and down?

It took 10 days, 8 days up and 2 days down. A bit longer than usual, but Team Kilimanjaro had allowed a number of acclimatisation breaks for me. They were just as determined as we were that the ascent would be a success, Honorary Members of Team Iain, all of them.

How did your team stay motivated during the climb?

No motivation was needed, we all knew it was going to be a success. Some had problems with tummies or headaches, but nothing to stop us getting to the top. There was a lot of good hearted banter, as you would expect from a group of boys. Karen just had to get used to it!!

What did you eat during the climb? What were you looking forward to eating when you were done?

Each meal was always varied, well cooked and well presented, with porridge and omelette for breakfast, three course lunches, always seated outside, and a three course evening meal. How the cook managed with the basic facilities he had we just couldn't guess. But, I couldn't wait for a burger which I got on the way back to our hotel from Kilimanjaro!!

How much money did you raise for Ataxia UK?

In the end we raised £11,000!

A ‘Spotlight’ post wiil be featured on the FARA Ambassador Program blog each month to recognize some of the people living extraordinarily in the face of Friedreich’s Ataxia. We are thankful for everyone working so hard to support the search for effective treatments and a cure! We hope that each post on this blog will be a source of encouragement to you. Together we WILL cure FA!

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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