Hayley goes the extra mile for Moorfields

Hayley Kennedy from Orpington, has been a patient at Moorfields for many years and was diagnosed with Stargardt disease, a rare inherited condition affecting one in 8,000 to 10,000 people. This was the start of many adventures and challenges for Hayley, who has already raised an impressive £8,500 for Stargardt research and paediatrics. Hayley was kind enough to share her story with us about her adventures so far and what she plans to achieve next.

“I was out for dinner with my parents and one of my brothers to celebrate mine and my dad’s birthday. 'Hayley' mum said, 'will you run a 5km for charity for me please?'  I looked at her quizzically. 'Mum, no one’s going to sponsor me to do a 5km, they know I play hockey so that's not a challenge. I'd have to do a marathon or something like that if you want to get sponsored'.

I woke up the next day to my mum asking what marathon I was going to do. That was how it all started... the first day I went out for a run it was cold, icy and started raining half way through. I was only running 2km, having realised I hadn't played hockey since my Stargardt's as it was now much harder to see the ball and easier to get hit by it! I was clearly unfit, I was starting from scratch.  I had looked up marathon training plans and decided to settle on a plan that involved one or two short runs, a medium run and a long run each week. I would use the weekend to do the long run, and mornings to do the medium and short runs. I used apps to measure out the path I would run to ensure I hit my daily targets and used apps for music and tracking my pace. After about two weeks, I realised how tough this was going to be. It wasn't just that I had to get up in the mornings to run, I had to change my whole diet and social habits to make sure I had enough energy to get up and run for each session. As training continued and the running distances increased I no longer considered  a short run to be 2-3km, a short run was now 5-7km and this was taking me 30-40 minutes compared to the 30 minutes it had took me to run/walk 3km at the start of my training!  

The Brighton Marathon

The day of the Brighton Marathon came around too quickly. It was 2 weeks before the London Marathon and I would have liked the extra two weeks to train, but here I was at the starting gates crying because before this moment, I hadn't quite appreciated the enormity of what I had said I would do. I started running slowly, just slower than the pace I'd done on my longest run so far, being 33kms. I gradually picked up my pace and managed to get into a fairly steady pace until around 38kms, where I was in a lot of pain in my hip and knee joints. Every step was painful, but I knew it was going to be a lot quicker to run/hobble than to walk. At that moment, Katy Perry’s 'Dark Horse' came through my headphones, this had been the song I used listen to as I ran up the last hill on the way home during training. This gave me the last bit of energy I needed to make it over the finish line to collect my medal. I could not believe I had made it. After months of training I had actually done it.

The next challenge:

Planning Mt Kilimanjaro

It took me a good year before I could even start thinking about another challenge, but towards the end of 2015, myself and my friend Amanda started talking about climbing Mt Kilimanjaro. Neither of us had been to Tanzania and it was on the bucket list. By this point, I had moved to Singapore for a job and being a country at sea level, there were plenty of opportunities to train for high altitude.

We started looking into companies and routes to climb the largest free standing mountain in the world. We decided on the Lemosho route over 8 days because from our research, this gave us the highest chance of success. What we didn't realise was that we had apparently picked the worst time of year to go! We searched for dates and routes and eventually found a company called Exodus who offered the dates we wanted. All of the warnings were stating: end of season, expect rain and a lot of it. We booked anyway.  

Training for Mt Kilimanjaro

I started training by going for long walks in 30 degree heat in Singapore. Three times a week, I roped in different friends to keep me company while I walked 12-15km either round Marina Bay, past Robertson Quay and back to my condo, or hiking around MacRitchie reservoir on the weekends.  

Training hikes had to be built into a busy work and travel schedule. The first hike was to Tigers Nest Monastery in Bhutan (why not tick off some bucket list items and train at the same time). This was a beautiful hike in late November, but probably a bit early in my training for 3,200m! I made it, took it slow and enjoyed the walk. I was very grateful for the tea house half way up! Next was a trip to Bali for New Year, but rather than party the night away, we got up at 2am to hike Mount Batur for sunrise! We set off in the dark, realising we hadn't planned this too well as we didn't have head torches and we also had way too many layers on for the humid temperatures of Bali. What felt like hours and hours later, we were rushing to put our layers back on on as we climbed higher and higher and the air temperature was dropping. We transitioned from climbing up mud and rock, and through lush vegetation, to climbing over large igneous rock boulders. A little further and we could see the summit. We found a place to sit and cool off after the hike and sat watching a glorious first sunrise of 2016, as the sun inched over the distant peak of Mount Rinjani. What a great way to start what would turn out to be a fabulous year.  

My final training hike was Mount Kinabalu in Borneo. I  booked a Friday off work and flew out on Thursday night. Unbeknown to me at the time of booking was that I'd have to be in London on Monday morning to meet clients for work! The hike up Kinabalu takes 2 days, you stay above the half way point overnight before hiking at sunrise to the summit on day two. This would be the highest I would hike before Mt Kilimanjaro's 5,900m and would be the most useful in terms of altitude. Day one was a beautiful walk that took about 7 hours, arriving in the afternoon and having some time to relax on the balcony looking at the beautiful scenery below. Take a book or something to do if you ever do this hike! Day two (with a head torch) was a struggle. We started hiking at 3am and reached the summit before sunrise. We set-up to watch the sunrise at over 4,000m - it was chilly! The moment the sun crept over the horizon, it was time to start the hike down, chasing the sun for warmth. The hike down was amazing, and seeing what we had climbed up in the dark surprised me. Had I known what it was like, I never would have summited!

Climbing Mt Kilimanjaro

Next was the mighty Kilimanjaro and what a challenge this was going to be. I flew from Singapore and met Amanda in Addis Ababa before we flew into Tanzania together. We met our group of 6:4 guys from Scotland, one from the UK and the other was a British guy living in Switzerland. That would be our group for 8 days of hiking, camping, eating, laughing and motivating each other.  

We met our team in a forested area - we had so many staff, porters, guides and chefs, around 36 people walking with us and carrying everything. It was quite overwhelming how strong and fit these amazing people were and there was no differentiation between man or woman, they each carried 25kgs! On top of that, most of them could carry and walk quicker than us and assemble the camp before we would even reach it every afternoon.

The scenery whilst climbing Kilimanjaro was very diverse and changeable. We walked through forest for nearly two days, our pace always the same - pigeon steps. They assured us that this was going to get us to the top, and as far as I was concerned, they knew best So we walked and talked and got to know our fellow hikers and guides. It was interesting hearing other people's stories, what motivated them and why they were here. Sometimes you could just enjoy walking quietly while thinking or enjoying the scenery in your own little world. As we climbed higher, the scenery began to change and the vegetation got sparser. Each day we would walk to our predetermined altitude and then come down a hundred metres or so to sleep preparing ourselves for higher altitude. The evenings, when the temperatures dropped, were spent laughing and joking and eating delicious food I have no idea how they managed to cook on the side of the mountain.  

After day three, we were all discussing the fact that we didn't feel we had increased much in altitude and we wondered when we were going to see the top. This didn't happen for another few days, where suddenly we turned a corner and could actually see the summit, seemingly very far away. The butterflies started flying around my stomach as I started to think, oh no, how am I ever going to get up there! But we continued on, one pigeon step at a time, through the Shite Plateau, past the lava towers, up the sheer face of the Barranco Wall (not going to lie, I was terrified the entire way up the 260m rock face) and continued until we reached Barafu Camp, our last camp prior to Summit.  

To reach the summit, we left at 2am to begin the hard slog to the top. We started at 4,640m and we had to get to 5,895m. It was dark except for a half moon in the sky. We zigzagged up the scree, stopping regularly for a few minutes, but after 7 days together we weren't going to let anyone fail. The entire group kept each other going. One step at a time and 5 hours later we reached Stella Point, where we stopped for tea and chocolate. Stella Point is at 5,685m and is the lower edge of the crater rim. This is where you need to get to, to say you've climbed Kiki, but it is not the place where the fabulous photos and true celebrations occur. That is at Uhuru Peak,the highest point in Kiki and where we were going to get to. We had made great time to Stella Point, but to get to Uhuru, another 210m ascent would take over an hour. By this point mild altitude sickness was taking hold, with nausea and exhaustion taking over, each step was hard work. The scenery of the glacier and the thought that I couldn't let down all those who had sponsored me kept me going. Eventually we saw the signpost for Uhuru Peak and hugged and high-fived each other in celebration. We spent a bit of time here taking photos but it was bitterly cold and we still had another 7 hours of descent that day - and we wanted to get back to base camp in time for lunch. So after 6+ hours of ascent, we began the long path back to the Mwaki Gate, which right now seemed so far below us but by tomorrow lunch time we would reach to complete our trek.

A massive thank you to all of those who supported me through both of these challenges and though the difficult times of this illness. 

I will now take on my next challenge, working as a dive instructor in Malawi. I’ll be working closely with charities to  encourage those dealing with sight loss to try diving. If anyone is interested in giving it a try, please let Moorfields Eye Charity know and they can pass on your details to me.”