18 January 2015

Two years ...

Hi everyone

It's been a while since I blogged, sorry.  I don't want to turn Alice's blog into a place where I write about senseless things like painting my nails and eating pizza but four months might be too long!

Today, it's been two years since we said our last goodbye to Alice. I can remember it like it was yesterday. Alice had requested a humanist funeral and the celebrant dyed her hair purple. It was a beautiful day - it snowed. Not that slushy stuff, but lovely, fluffy white snow. And where we went for drinks afterwards had a gorgeous dog and Cath Kidston curtains at the windows. It was a weird day, the sort that you wouldn't really plan, but I think Alice would have liked it because it was cosy.

I mentioned the Heart of Ulverston awards in my last blog. This was an important nomination for me as although I've won lots of awards, Ulverston is my home town and very important to me. I was very honoured to win my category which was for young citizen, especially as there was two other very worthy nominees. I just need to practise my public speaking as I'm hopeless when it gets to the speaking part. But it was a great night and once I'd accepted my award, I got to relax.

We held our first charity ball at the end of November. I know that a lot of people worked really hard to make it happen, but the whole thing was brill and I really enjoyed dressing up and having fun. The next day, on Saturday we wandered around Ulverston's Dickensian festival and on Sunday, in Alice's honour, we celebrated our Christmas in November for the fifth year. I got a GoPro camera from Mum and Dad which was top of my wish list. It was a special weekend, because our American friend, Amanda, was staying with us in the UK and got to share it with us.

Alice's birthday was next and we had a lovely time with Paul and Leigh at Emma Bridgewater in Stoke. It was one of Alice's favourite places to go and she spent a lot of time there when she was having treatment, so it felt right. We lit a candle for her, ate cake and painted pots #19InTheStars

We don't really celebrate 'real' Christmas anymore. It's not the same without Alice and it's so commercial anyway. Last year we went skiing and this year we decided that we needed to go somewhere hot, so we spent Christmas in Cape Verde, which is a collection of islands in the Atlantic ocean, off the coast of Africa. There wasn't much there, but there was a beautiful beach that you could walk miles along and the people were so lovely. I took my surfboard with me, but the ocean was a bit vicious and I didn't spend that much time out there.  We spent Christmas Day on the beach and went for a long walk which was nice and relaxing.

Earlier this week was Alice's two-year anniversary and thanks to Phil, who is a friend of our charity, we were lucky to spend some time at the Coppermine Cottages which are half way up Coniston Old Man. Just like last year, we spent Alice's day on the mountain with the dogs and toasted her with champagne. I made a video of our day - it's not perfect because it was freezing and blowing a gale, but I hope you like it and it captures a bit of our day - MY ALICE DAY VIDEO

I've been studying hard for my exams which are quite soon now. I spend half of my time with a book in my hand so it won't surprise you that my favourite subject is English, closely followed by art. I'm reading Wuthering Heights at the moment - it's an intense love story but I'm saddened by Heathcliff's self destructive journey. Alongside Wuthering Heights, I have two works to study for my GCSEs -   'Of Mice and Men' and 'Romeo and Juliet'. Very different but both tragic!

I'm still at Oxfam and still doing things for Alice's Escapes, although it's fairly quiet at the moment and I'm trying to make sure my school work doesn't get behind.

I've been hooked on the documentary 'Walking the Nile'. If you haven't seen it, it's still on 4OD and it is really, really good. Basically, Lev is documenting his attempt to be the first man to walk the entire length of the Nile, along the longest possible route, which is almost 4,000 miles. WOW, I'd love to do that but doubt I'd be able to and probably wouldn't have the courage anyway! So, at the weekend, Mum surprised me and I got to go down to London and enjoy an evening out with some of the team, including Lev and Boston (so now I know that they survive)!

During the February half term, I'm excited to be flying out to stay in New York City and also visit our friends in Rhode Island. I've been to New York before but it's a big city and I've not done all of it. I've found out that Romeo and Juliet is being performed by the New York City Ballet on the week I'm there so we're going to try to get to go along.  Then, at Easter, I'm off to the French Pyrenees to do some walking, so hopefully get to play with my GoPro again :)

May will be K2B time again, so I need to do some serious training (and even more serious fundraising) and, before I know it, it will be summer and I can get back to Cornwall :)

Hope you are all doing okay, will update again in a few months.
Love Milly x

12 September 2014

Give a Spit

My biggest news is that now I'm finally SIXTEEN, I've be able to join the Anthony Nolan bone marrow register. I've written more about it below, but please think about whether you could join or raise awareness :)

In my last post, I was thinking about going back to school and I felt like it was almost the end of summer. But I was wrong ...
On my birthday week, my Mum and Dad surprised me by hiring a VW camper van for the week. It was amazing but what was really special was that the camper van was called 'Alice'. Mum and I drove SLOWLY back to Bude and I was so happy to be back down there. I thought that I'd already got my birthday present but when I turned up at Big Blue on my actual birthday morning, I couldn't believe that Mum and Dad had bought me a new surf board from Zuma Jay.
My Sweet Sixteenth
Unbelievably, I managed to catch the very first wave I went for and I had a really great day. At night time, we went out for dinner at the site we were staying at which was called Wooda Farm - it's where we stayed earlier in summer too. When I wasn't surfing, me and mum spent the week driving around in 'Alice' which was so relaxing. Everywhere we drove, people beeped and waved at us. It's definitely something to add to your 'to do' list.

When I got home, I had to get all my school stuff sorted as I went back at the end of August. I'm in my final year now, year 11 and it's all work and exams. I haven't decided exactly what I want to do next year, but I'm hoping to do something in TV / film - either behind the camera, art dept or screenwriting, so I might go to college and take the BTEC route to Uni, rather than standard A levels. Other than English and Art, I'm not really good at anything and so I think I'd be wasting time trying to do 4 A levels. I was also interested in doing something with the outdoors, but although I got an A* in the physical side, I got an E in the theory and ended up with a combined 'C' for my GCSE PE. Science definitely isn't a strong point of mine. Sorry Mrs Hesford!

So, I'm back at school and have loads of work that I need to get sorted. I'm enjoying Geography which is one of my new one year courses and off on a field trip next week, to gather data from a river.  I've also agreed to play netball for school, which is really as a fill in, but without a few extra people volunteering, we won't have a team and so I'll just do the best I can! I'm back to working out a few times a week as I've let that slide over summer - I have a few events to attend in the next few months, so I don't want bumpy bits in my dresses! Plus it will give me a head start for the next K2B in May.

The first event I'm going to is really special because it's in my home town of Ulverston. In the summer, I was nominated for a "Heart of Ulverston Award" for my charity fundraising and voluntary work.  Anyway, last week, I found out that I've been short listed against two other young people and the winner is chosen by public vote. So, if you would like to support me, I'd appreciate your vote ... Text "EM HEART 5" to 84555 ... it should send you a "thank you for your vote". I think :)

After the awards, our charity is holding a 'Christmas in November Ball' on 28th November. All the details are going to be on the website soon but it's going to be Black Tie and I think there'll be a lot of purple dresses :) Alice would love to know that we are keeping her Christmas in November going - for anyone who doesn't get it, you'll have to look back through Alice's posts, but we'll be putting her Festive Lights purple tree up again. It's also followed by the Dickensian Festival in Ulverston, so it will get everyone in the mood for Christmas.
Alice - Christmas in November 2012
A couple of weeks ago, I joined the Anthony Nolan register which was a big thing for me. I promised Alice I would do it as soon as I could and I just hope that one day, I'm a match for someone. There can't be anything better than saving a life.  Mum is starting up a voluntary group to visit and educate college students in the area and so I went along to one of the training events and it was really nice to see so many others turn up to join our team. Having a team of people will mean that we can cover all 16-18 year olds in the local area. If you want to know more about the Anthony Nolan register (16-30) click HERE ... if you are older but would like to help, details on Delete Blood Cancer (18-55) is HERE.

My very own spit kit! 
 Just over a week ago, Team Alice made lanterns and joined in the Ulverston Lantern Festival again. We didn't do it last year because it just felt wrong without Alice but this year, we thought she'd want us to and we had a great evening. I made Team Alice t-shirt lantern, and Mum carried the Mabel lantern that Alice made three years ago and it got lots of attention.  The weather was brilliant and the fireworks at the end were like been at Disney, they were amazing!

I've just been down to London to see my new team to plan the next stage of my treatment. I'm slowly having to move on from Great Ormond Street which is really sad and I was at the Eastman Hospital in London to look at moving my teeth and my jaw forward. I was a bit unsure about the hospital initially,  but the team were really nice and I still have some of my old team too, so that made it better. I think it's just because I've gone to GOSH for 16 years and everything feels familiar there.

This week in school we had a lady who'd had cancer come in and talk to us about a charity she is involved with and she talked a lot about cancer and kept saying how rare it is for a child to get it. I get uncomfortable when people talk about cancer in a simplistic way, because as well as me losing Alice, there's other people in our school who have lost people very close to them. It's nothing to do with been a fighter - there wouldn't be any cancer left in the world if fight had anything to do with it. It's luck of the cancer, luck of where you live and luck of the treatment you do (or don't) receive.  After accidents, cancer is the leading cause of death in children. It kills more children than the things that most Mums and Dads worry about most.

Well, I started this on the 12th and it's the 28th now, but at least it's here - I have loads of work to catch up on and I've to get my outdoor gear ready for a geography field trip tomorrow, so I better go!

Milly x

12 August 2014


Hey Everyone,

Sorry I haven't written a blog in a very long time and i wish i had an excuse but i don't. I am so sorry for not keeping all you guys up to date and from now on i will get back in to the habit of writing a blog every month. When i came on to write this blog, i didn't realise how long it had been since i had posted something. It made me recognise how quick time goes by. I just hope that you can forgive me.

So, a lot has happened since February. Unfortunately i have the memory of a goldfish and can't remember much of last week let alone 6 months ago but i will try and work my brain for you guys.

Me and Callum
I guess the first thing to tell you all about is the Keswick to Barrow / Coniston to Barrow walk back in May. This year i did the Coniston to Barrow again and i walked it with my friend, Callum. The weather from what i remember was actually good for a change and we didn't get drenched :) However my knee started playing up this year which wasn't great because it kept doing spasms but everything was fine thanks to the support we had from the fabulous TEAM ALICE.  It was an amazing team yet again and although its late, I can't thank you enough. 
As me and Callum were doing the last mile on the walk, my uncle gary caught us up (he was doing the K2B and is the fastest walker I've ever known :D ). We all finished together which was really cool because a got to finish it with my uncle and one of my best friends. 
I would also like to thank every person who sponsored me, I have raised £4019 for Alice's charity because of your help. I have such incredible support from you all and i am so so grateful for that.  

Climbing Scafell Pike for COPS
A couple of weeks after that i climbed Scafell Pike in the dark for COPS a charity looking after police survivors. Everyone of Wainwrights peaks had a team climbing it and at 3am we all lit our beacons. It felt funny to have my head torch on again but at least I got to have Mabel and Lottie keep me warm :)

I had my biology and PE GCSEs in May and they were much harder then i thought. Its the first exams i have done that are actually serious and i know looking back now i could have revised more. The thing is I get distracted so easily and when i'm meant to be revising, i just want to be outside by the lake or on the mountains or with my friends. 
In less than 2 weeks i will be going back to school to be in Year 11 which is top of the school and i know how hard i have to work. Its ridiculous that i'm in year 11, i still feel and look like a year 7. 
Trip to Paris with Mum
Anyway enough talking about school. At the beginning of my summer holidays me and my mum went to Paris. My mum surprised me with a Segway tour so that we could see all the sites. It was so much fun ( a little scary ). I didn't realise how hard a Segway was to control and ride. Me and mum giggled for most of it. It was a good trip except most people we met were completely miserable and rude, which in a way made it a bad trip. It would of been much more enjoyable without the people being arrogant. 
I didn't realise how expensive Paris was and i just want to thank my mum so much for taking me there. 

Me, mum and dad also went camping in 'amazing' Cornwall. I loved this holiday so much, i actually learnt to surf with Big blue surf school .... properly. I spent everyday on the beach with my surfboard and i think i have the surfing bug now. I just always want to be improving my surfing, its a shame Cornwall's so far away because i'd be out on the waves everyday :(
Mabel and Lottie were also with us, so by the end off the week they were also in love with the beach and the ocean (swimming). 
Mabel & Lottie had a lovely time
Yummy food in Cornwall
We visited a place called Lanhydrock House, it's part of the national trust and we looked around the house, it was massive and so interesting to look at all the paintings. We went to Watergate Bay for a day, the beach was so clean and big. My dad actually lost his phone in the ocean there whilst "paddling" with the dogs :) To be honest it was quite amusing to watch him looking for it :) 
I didn't want to leave at all and i could quite happily move there now but i'd miss the mountains.

Recently it was the North Lonsdale Show where Alice's dog show was held and it was fantastic. I didn't think it would be so popular but it was. Mabel actually won the 'best trick' which was to pick up a balloon and return it to my mum without popping it. It was so funny to watch and i was very proud of her :D  

The charity is doing well and we still have great support from everyone around us. The caravans are busy and the families are enjoying there time here in the Lake District. I sometimes get to say 'Hi' to the people / families who come and it's so nice to meet them. Just to see the impact the holiday has on them and how they are having such a wonderful time really does show that spending time with the people you love, is more important than anything. 

It was Mabel's birthday today, she turned 4 and yes, she did get lots of toys and biscuits from us. It is also my birthday next week and im turning 16. Which is so crazy to think that next year i can start to learn to drive (which i cannot wait for). I am hoping to run a special bone marrow clinic, as i'm turning 16 i can officially go on the register and i am so happy about it. If you are 16-30 and aren't on the Bone Marrow Register yet, you really do need to get on it because you could potentially be saving a life JOIN HERE 

So again i want to apologise about not posting for such a long time, and i feel bad now that i haven't.

I love all you guys for supporting me and the charity. Thank you.

Promise to post next month,
Milly xx 

12 February 2014


Hey Everyone !!

Hope you are all good and you haven't come down with a cold. The weather is awful here and i really have decided that i am moving to a hot country when I'm older :)

It's official, the K2B training has all started and everyone is really determined this year to improve on their time. Let's hope the weather is better than last year, it was horrendous and i remember being wrapped in a tin foil blanket as i was walking over kirby moor, everyone was shivering. 
Some eager people started training after we got back from Kilimanjaro, back in October. I wish i could do that again, even though it was the hardest thing i have ever done, i did manage to enjoy it. Except summit day :)) but it still felt amazing that I'd ticked off such a huge thing.

There are lots of things that i was never expected to do because of my syndrome.
Crouzon Syndrome is a genetic disorder characterised by the premature fusion of certain skull bones. This prevents the skull from growing normally and affects the shape of the head and face. Anyway, my parents were told that I would never be totally normal, that I would always look a little bit different and that I probably wouldn't achieve half the things that I have. I always looked different to my friends and everyone else. It didn't really affect me. I have had many surgeries in my life to help my eyes, face and skull. The life changing one was when i had the red frame surgery. It is basically a frame that is screwed to your face and they broke my bones and then stretched them a bit every day.

                                        It was red nose day, so we attached red ears to my frame :)

After i had it, it gave me a load of confidence, I'm not going to lie and it made me feel normal but over the years i have thought that it shouldn't matter how you look, or the way you talk, or the way you smile or if you are disabled. You can achieve anything if you put your mind to it and i know this because like i said, the doctors never thought i would be totally independent. I never let it bother me but it feels good to have summited Kilimanjaro and be the youngest EVER to be included in the Queen's Birthday Honours, who would have thought that when i was 3 years old.  Even now, after my surgeries, i know my face isn't perfect. The red frame made my nose go wonky and i know my eyes will always be a bit bigger and i notice it everyday, but i try to not let it bother me and just live my life to the fullest because you only live once. I guess what I'm trying to say (after all this mumbling) is don't let anything stand in your way of living your life the way you want to and never give up on yourself. 

Anyway school is really hard at the moment and the work is so difficult because we have our exams coming up, more and more pressure is building up. I'm looking forward to easter because i think we are looking at going away some where hot (TANNNNN) for a short break!!  i am also really excited for summer because i am going to look for some work experience and hopefully august will be hot like last summer. I love (hot) summers because you can just chill with your friends and family and have BBQs. I love going down to windermere and going swimming or sailing with my friends. As much as i love snuggling in front of a fire with hot chocolate, i am definitely a summer girl (i would wear shorts all year round if i could hah). 

I know this blog has been quite a serious and probably boring one but i just really wanted to share my thoughts with you about having a disorder. I hope you all have a great Valentines Day and a pleasant month :) 

Milly x

12 January 2014

A year without Alice

So it's 2014. I can't believe that we're in a different year and that everything about Alice is last year. I wrote this for Alice's one year anniversary but after I sent it to the local newspaper for a special piece they were doing, I didn't want to publish it straight away and so it's late and I'm sorry.

"A Year without Alice"
Some days, it feels like yesterday that I last spoke to her - if I close my eyes and concentrate, I can hear her voice as if she was stood next to me.  Other days, it feels a long, long time ago.
And sometimes I miss her so badly that I feel my heart will break.
When I was little, Alice was very protective of me. If anyone upset me, they'd have Alice to deal with. If I threw a fit at something, she'd slide a little note under my door, desperate for me to be happy again. She hated people to be unhappy, she wanted to make the world smile. She'd transform our bathroom into "Alice's Spa" and invite me for bubble baths and massages and nails. And when it was stormy and I was frightened, she'd come into my room and climb into bed with me and watch movies to hide the noise. And then she got ill.
As she became sicker, I watched as she faced everything with a smile on her face. Every time it seemed like there was no more treatment, her and mum would go off and find a way. I never thought that she wouldn't get better. I grew taller than Alice and I sat on her bed watching movies with her. I painted her nails and rubbed her back and she told me how much she loved me and me her. And she asked me to make a difference and make my life count. So I'm trying.
We went skiing over Christmas and I think I did really well and by the middle of the week, I could ski back to the village with Mum. We stayed in a really nice hotel and me and Mum kept sneaking back from the slopes to go in the spa which was awesome. The only thing I regret is not trying snowboarding because I think I'd have enjoyed that even more.

For Alice's anniversary we stayed at the Coppermines Cottages in Coniston. They already support Alice's charity but when we were looking for somewhere to stay for her anniversary, Phil invited us to go and stay for the week and it was stunning. We had log fires every night and the dogs walked were exhausted from all the walking mum did with them.  On the 12th we went walking up Coniston Old Man and along to Wetherlam. It was snowy and really cold on the top but the view was beautiful and we opened a bottle of champagne (Mum loved this part of the walk) and we all had a drink for Alice. I wanted to be snowed in so that I could go walking every day and didn't have to go to school. But the school drivers picked me up from Coniston and they were really friendly (sometimes we have miserable drivers from Ulverston), so I got there every day!

This week I had my mock exams which were awful. I've done Biology theory and PE theory which are probably my worst subjects, but I have PE practical on Friday which is normally one of my favourites, except I have to do hockey which I don't play - doh! I also had a disastrous Spanish test - perhaps I shouldn't be doing two languages!
"Everyone is a genius. But if you judge a fish on its ability to climb a tree, it will live its whole life believing that it is stupid" - Albert Einstein 
I'm still going to Oxfam on Saturdays and there's some really nice people volunteering with me. My job is usually sorting the clothes into piles and pricing them up, standing by a window looking out into the market square. I love fashion, so when I find any designer stuff it takes me even longer to sort them!

It's only 15 weeks until the K2B and I'm trying to keep my fitness going. As well as my mountain walking, I've been running and going to Zumba. I'm really nervous about keeping hold of Alice's Trophy. Last year I thought it was important to win it for Alice, but now that it is next year, it would really upset me to hand it back. So I need to fundraise and make sure we keep it! If you'd like to support me, any amount is REALLY appreciated and we cover all our own costs so the charity gets all of the money you donate - SPONSOR ME HERE

We haven't got any plans for summer. I'd love to go back to Vancouver and it's on Alice's list, but I'd like to visit Thailand too.  Mum and Dad are so indecisive that usually things are booked up when we eventually agree on something. I think that me and Mum will go camping in Cornwall again which was one of my best holidays last year and we can take the dogs too. When I'm older, I'd love a VW camper van in duck egg blue and I'd travel around doing festivals and go surfing in Cornwall with my friends.

I've been thinking a lot about my future. My best subjects are probably English and Art and I'm really interested in film, especially screenwriting. I find it super interesting how you turn a book into a movie and I feel that it would be something I'd enjoy. I have already been looking at colleges and have seen a few that look amazing. Mum will have to get more Labradors if I move out!

I hope everyone has a good month.
Lots of love,
Milly x