Have you ever thought what it would be like not to walk?

 My name is Millie Hawes and I am now in the Fifth Year and I can’t walk. I have now finished my MAD challenge and thought you may like to get a flavour of my adventure.

 DIARY:

 Day 1 Monday 15th August

We set off at 8am to head up to the Lakes - I was feeling rather nervous as I had no idea what to expect. Sam (12), Jamie (10), and Mima (9) also had no idea what the next few days would be like. Our first walk was at  Pooley Bridge - a very safe half a mile walk - we all laughed so much, as no sooner had we started than we had finished!! If it was going to be this easy then the next few days would be a doddle. Little did I know that three walks later, due to some mistakes on the map reading we would end up off piste and I had to battle over rocks, swamp and thick mud. To be honest I hated it and I found it almost impossible to keep myself upright but Dad had to push and heave whilst Mum kept hold of me to keep me stable. Thank heavens the walks for the rest of the day were much easier though Scout Scar was incredibly steep and really chewed up my battery. To come down, I either had to go down backwards or get Mum to hold onto me and she would walk down backwards to stop me rolling down the slope! I decided she could do the backwards bit! The view at the top though was amazing and I was glad I was able to see it with the others. By the end of the day (7.30pm) we had walked 13 miles. We had started well but ended on a bit of a low because my granddad fell and had to go to A & E and was told that he couldn’t walk for the rest of the week – my grandparents were to be on picnic duty from now on.

Day 2

It was chucking down –in fact Dad called it biblical! We knew we had to go on whatever the weather and even though it was so ugly I was really pleased that I had a huge tent to put over my chair – so I was the driest of the lot of us. It poured all morning and I splashed through puddles – we walked in Tarn Hows which would have been a great walk if we had been able to see where we were going – the cloud was so low all views were left to our imagination. We were in and out of the car, having to make decisions about which chair I should use on each walk because the adaptor we had to charge the battery whilst we were driving decided not to work. I definitely prefer being in my big chair as it’s far less bumpy but on the smoother walks I had to go in my manual chair with a power pack to save the battery on the big chair for the tougher walks. By the end of Tuesday the sun came out and we finished walking by 8pm – we arrived at the Bed and Breakfast having been told it was accessible but found a huge step to conquer and very little turning space. We had a couple of smaller ramps but luckily the landlord raided his shed for planks of wood for me to get into the house. As I drove up the makeshift ramp, the planks of wood snapped under the weight of my chair but I just managed to get in with lots of pushing and pulling. Today we clocked 19 miles – quite an achievement considering the hideous weather.

 

Day 3

Today we woke to sunshine - what a relief. We were going to meet up with 3 other families today – the Raes, Mahers and Kenworthys. Dad got rather agitated as he had set us such a tight schedule that he got very cross with the faffing and chatting that happened whilst we had others with us – typical man always says Mum talks too much. We walked at Buttermere, Ennerdale and Derwentwater  - our supporters left us about 5ish but we still had 3 more walks to finish to keep on track – we didn’t want to hear the wrath of Dad ! Our friends, who know the area well, were unsure we could manage the next walk, Catbells , but in our determined way we decided we had to make the decision ourselves. We eventually found the start and ventured high above Derwentwater – Mum kept banging on about the views ! It was all very well being so high up but it meant I had a really steep path back down – and again I was slipping and sliding and to be honest I found it terrifying as I could not control my chair. Dad had gone on ahead and so Mum, Jamie and Sam had to hold me and the chair to stop me going over the edge. They realised they needed help. Dad was already in the car working out the route to the next walk oblivious to the trauma up the slope – we screamed at him to come and eventually I made it safely back down – phew! Onto the next walk... We ended the day walking at Friars Crag another beautiful walk according to Mum! This was just as hairy a walk. I had gone down to the last flashing light of my battery and really had no idea how much power I had left.  We were still some way from the car and had to battle tree roots – slippery paths, boulders and slopes which the boys had to help push me up as my chair had lost all acceleration – no mean feat when they were pushing about 30 stone (200kg) up a hill!  We were all so relieved to get back to the car park but first I was made to go and ‘wash off’ my wheels in  Derwentwater before I was allowed back in the car because I was caked in mud! This was really testing my chair to its limits – I love it, but it is getting quite old now and I think we were all nervous!  We finished at 8pm and another 18 miles was clocked on the pedometer.

 

Day 4

Tessa, my aunt, arrived to walk with us which was really special and we had a fab walk in brilliant sunshine to Force Crag Mine, which was about 6 miles – we had a video session which Tessa hopes to use for corporate sponsorship – it was hilarious and we had many takes before we got it right! Next challenge: a flat tyre – thank goodness it wasn’t my chair but on our car – never a dull moment! Tessa then experienced the diversity of walks we have been on – going to wetlands and then a walk down through to an old pre-Norman chapel. The remoter ones are definitely the better ones. Tessa and my grandparents left to head home at lunchtime and we carried on – 7 walks still to complete. We joined up again with the Kenworthys – Mandy and her 3 great little girls were brilliant in walking with us and Rebecca (aged 6) was really keen to walk with me never stopping chatting! She was great company. Our last walk of the day was at Blea Tarn – Mandy knew the way so we followed her. The journey took us high into the peaks of the Lakes and down into the valleys on single track lanes. We were determined to finish it even though it was already 7.30pm. However, it was not the terrain which defeated us nor my chair but our car – we got grounded on a hump back section of the single track lane and could go no further – Dad had to reverse half a mile back up the single track to find somewhere to attempt a 55 point turn ! We had no phone signal to tell Mandy that we could not make it but another car passed by and was able to tell her. It would have been a really late finish that night if we had walked so I think secretly we were quite pleased to miss that walk. I was aching – my neck was sore as I had been thrown about so many times. One more day to go and were all keen to get to our goal.

 

Day 5

Last day! We were allowed a 15 minute lie in today! Two walks to go and we aimed to do them extra quick! The first was 7 miles down an old disused railway track. Whilst we were on the walk one of the local Cheshire newspapers called to say they wanted some more photos – even though millions have been taken already Mum got the camera out again! You could tell that everyone was getting a rather tired but we had been told it would be worth our while if we did not moan or whine throughout this challenge and we were all doing really well. Last walk done and we clocked 77 miles on the pedometer which was way more than the original 39 we had committed to do.

 

On reflection I really had no idea what I was letting myself in for – the walks were far rougher than I expected as the descriptions of the walks were not always true to word. When I was in my smaller chair I felt every single lump and bump on the path and with a less comfortable chair I had to work that much harder in keeping myself stable but we really couldn’t have done the challenge without both chairs. It was a very tiring week but I feel really proud of myself for what I have achieved. However, I was also really pleased to be home and back in my own bed so I could have a decent nights sleep. I’m really glad we reached our walking goal – even exceeded it – and although it was a lot more challenging than I had expected we all had a good time despite all the problems we encountered and hopefully the money I am raising will make a difference.

 

Thank you to you all for sponsoring me and supporting me on this MAD Challenge.

   

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Many of you may have seen me in my wheelchair around school; or you may know someone in my family. The reason I have a wheelchair is that I have Spinal Muscular Atrophy (SMA) which is a genetic disease that affects thousands of people in the UK. Few people are aware of it but it is the leading genetic killer of infants in the UK. For me it means that I can't walk or even stand up and I depend on others for most things; from getting up in the morning to going to bed at night. It's not always much fun but I have some great people around to help.

 

SMA affects the motor neurons in the spinal chord and is a muscle wasting disease that limits movements, causes severe physical disability and sometimes even premature death. It is currently incurable.

 

There are three types of SMA; I have Type II, which means I depend on a wheelchair to get around and on other people for many other things. Babies with Type I struggle to survive beyond their second birthday. Type III is sometimes slightly slower in progression than Type II but the child’s health is still fragile and movement is limited.

 

The SMA Trust (www.smatrust.org) is the only UK registered charity that is dedicated to raising funds for medical research into a cure for SMA. A number of children with SMA across the UK, including myself, are taking part in a MAD (Momentum ADventure) Challenge to raise money for this charity. Each child is a team captain and we each have our own MAD challenge to complete. Overall, our aim is to help raise £2 million for The SMA Trust in order to fund research into finding a cure.

 

Being the captain of a team of people doing physical challenges (all of them MAD!) is a first for me and I intend to do it to the best of my ability.

 

We spent ages deciding what my challenge would be. It was really hard to know what to do but now, with my family and friends, I am planning to walk as many of the ‘39 Miles without Stiles’ across the Lake District National Park in the quickest time possible in August. This has inspired my aunt and uncle to cycle 1000 miles down the Danube and another friend to walk part of the Great Wall of China. All completely MAD!

I would love more of you to set up your own MAD challenge because if I can do it, you can too! Please join my team either by doing your own challenge and getting sponsored for it OR sponsoring me for my MAD challenge by going to my JustGiving page www.justgiving.com/Team-Millie. This would mean so much to me as the SMA Trust are working really hard towards funding research for finding a cure for kids like me.

 

Thank you

 

Millie Hawes