Saturday 21 April 2012

900 miles on bikes!

This will be an on going blog updated daily as i receive news... 



Leah Taylor, Ben Fairbank & Rachael Oddy Have set themselves an amazing challenge ~ Lands End to John O'Groats, a massive 900 miles. Within 12 days and all for Debra Uk.



A MUM has set off on a near 900-mile sponsored cycle ride from Land’s End to John O’Groats.
Leah Taylor hopes to raise £10,000 from the epic challenge accompanied by fiance Ben Fairbank and friend Rachael Oddy.
Her daughter Hollie Shaw, eight, suffers from the skin disease epidermolysis bullosa.
It is hoped £10,000 will be raised for the charity Debra which works on behalf of those with the genetic skin blistering condition.
Leah, of Greetland, said the ride was a tough challenge and the team hope to cover between 70 and 100 miles a day and finish within nine to 12 days.
They will be supported by driver Philip Beverley.
“I’ve been to a lot of spinning classes we have been doing a lot of training on our bikes,” she said.
Hollie, who attends Norland School is doing ok most days but is often in discomfort.
“Her skin can just tear off through touching it and she can be covered from head to toe in bandages. Part of the time she is in a wheelchair,” said Leah.
The condition means Hollie is unable to eat at times as her mouth, tongue, gums and throat are also likely to blister.


Leah is also organising an “It’s a Knockout” event at Greetland Community Centre on June 3. Teams of 10 people each have to raise £500 (£50 per person).
Anyone wishing to take part in that can email Leah at shawzyontour@hotmail.com.

To donate to the cycle challenge go to: justgiving.com/teamhollierides
Please please donate....Every single penny counts!



On the travels to Lands End!

My story

Where do i start!... 
I feel like ive pestered everyone so much in the past for sponsors.. but who wouldnt when at home, i have a child who from a far may look fine at time's, but take away the clothes and dressing and you have open raw wounds, no skin, or maybe blisters. Sometimes the full size of her arms or legs.. unfortunately this is what my Hollie and many other children with EB go through.. 
These wounds & blisters happen from the slightest knock or friction, which trust me when all you want to do is have a cuddle or pick her up and you manage to catch her by accident.. this  basically rips your heart to bits.
it isnt just her knackered shell that's broken, all this continues in her eye's, many a time Hollie has had to sit in a dark room until the blisters have healed, Her mouth, tongue, gums and throat also blister, making eating a very traumatizing event, due to this happening, Hollie has had operations to widen her throat and also had a feeding tube fitted into her tummy so she can be fed at night time.. 
We dont know what the future holds for our Hollie, weather she'll be using a wheel chair full time, wether her fingers and toes will fuse or the one that scares me the most.. the skin cancer.
Ben, Rachael and me will be attempting the HUGE aproximate 900 mile from the Lands End to John O Groats! all on our push bikes!!this will take us just under 2 weeks to do.. and i can tell im scared witless!!  ha ha 
All the money raised goes to the Debra Charity, this charity is not government funded, so every penny they have, is raised by them and people like us, Not only does the money go into research, but also pays for her amazing nurses, who travel very long distances to visit families like mine... there is so much more this charity helps us with.. i cant thank them enough. 
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.
So please dig deep and donate now.
http://www.justgiving.com/teamhollierides 

We're here !!!!!

Chat as the ride progresses :)



Leah....."Well sorry guys.. Couldn't check in earlier phone died!... We've been cheeky and done our 1st 21 miles!! Wooooo lol head start for tomorrow" 

Ben....."Hour and 15m and a nice 21 mile to shake off the travel legs! Just got dangerously dark!
Thanks all" 

Ben...."Day 2 starts in a lay-by on a hill, starting to rain and now the mileage gets serious :-/ shocking nights sleep in a mcdonalds car park!"

Leah... "And we've reached Devon already :)" 15.40pm 22/04

Rachael...."Another 45miles clocked in xx were doing great. Dinner stop then another 55 before bed"
Ben......"Falling off hurts!!!!! 97 miles complete! Tea time now then a few steady miles to finish the day!"
Leah....."Nearly at £2,500 come on help share the link... we've rode 97miles and I'm a complete emotional wreck :-/" Team Hollie
Leah....."Right back out for another 20 miles.. After two plates of beans bacon & sausage! Stuffed... Also I detest the A30! Fact!"

Leah....."We're in Devon.. We're about 12 mile from Somerset" 21.00pm 

 Day two, wrapping up for the rain!

Leah....."100 mile down :) now to find the campsite!... Hard days cycling and making up games like guess what piece of a car is that on the side of the road and guess the road kill..
Now me noo noo is in pieces!! :-/ ouch
"

Leah......"Moan number one of the day..... My noo noo is killing, my knees might fall off... Oh yeah it's throwing around 20 to of rain on us! Oh the joys! ;) .. Stay tuned for moan number two! ;) ha xx ... Oh crap what are we doing!?!??"


Ben......"Hand abs knee suffering from the fall, my whole arse area from the saddle and everything else hurts! Oh and it's cold and very wet!! But that's why it's called a challenge and not a Sunday stroll !!!!! Bring it on!!!!!!!!!!!!!!!! :)
Please note during the course of today my positive mental attitude will quickly decease!!! :-/
"

Thank god for over shoes!

Ben...."Coldest iv ever been! It's been slow tough going so far!"
Leah...."Overshoes are Not working!! Shoes are like little swimming pools! Slow sue, it driving rain and freezing :("
Leah...."Quick dinner break and a change of clothing... Driving rain and winds are so demoralising can't warm up.. Who ever said there was a friggin drought!"
Ben...."Another night in a car park as we are not part of the " caravan club"!! Day 2 complete and above Bristol. A drier better afternoon lifted spirits as by dinner time Leah was close to quitting ha ha"
Rachael...."We nearly all bloody did, I was hiding in my cave, Ben was looking for a train station, Leah refused to come out hibernation, Phil was booting us out the door lol x"
Leah....."200 miles completed!!!!!! ;)
My god couldn't have been more wet if I'd jumped in a pool! Ha ... Had a great Night.. carvery and a giggle, Ben telling us about his highly religious family..& Laughing at Ben riding round the massive roundabout 3 times! :-/.... now Camped out in a car park for the 2nd time this week! Lol"
Absolute class lol!!


Ben..."A nice 50 miles smashed off this morning!! Glorious weather and Gloucester countryside!! Guess the roadkill is favoured game"
Leah...."50 miles down this morning! What a glorious day too! NO RAIN whoooooooo lol lovin it today so get sponsoring and retweeting the link.. Love mum dad and my kiddie winks xxxxx"


Leah...."Hmmmm 300 miles.. You would think I'd be loosing weight.. Instead I'm swelling up!!! What's that all about??! Defo think it's retention of some sort ..."

Ben..."13 miles left to reach our campsite target for the day. That will be about 300 miles!!"

Rachael..."We are machines xx"
Ben..."Camp site tonight was at top of a massive fecking hill, great way to finish a 100 mile day! Hope to be up near Preston Tom but alot of rains forecast and that slows us!!! :-/"

Leah...."I'm so tired it's unbelievable.. 300 miles are done! I was so ready to give up today.. But Hollie cant give up so what gives me the excuse to do so! Sore everywhere.. Bruises all up my leg... Back and shoulder ache like you can not believe.. I'm so scared to get back on that bloody bike! :-/"

Please keep donating, every penny counts!! 

Leah...."Desperately trying to find highly waterproof clothing... It's lashing it down! I swear my sprits are soon going to be broken :'("
Ben..."A day of rain!!! Great!!! Pissed wet through it is!


 
 Enthusiasm slowly dying!


Message from Leah.......

Posted this afternoon

Hi everyone.. 
I want firstly apologise, we're having to come home... 
I promise we will be finishing this!!!!!.....
But not a lot of you know my dad has cancer... 
And have been called home to see him as things arnt good .. 
I'm so so sorry :'( 

Posted by Ben 


Appologies to all, the challenge Is on pause for now due to the ill health of Leahs dad and some things in life are more important! We will finish it though.


Another month and we'll back to looking like this :)


Leah just posted:

Getting closer!..... Packing the camper van!.. Ready for the next 600 miles wish us luck!!!!!
From Telford Hun, hopefully will be just about above Preston by tomorrow night..

Leah: 50 miles down already :) weather was perfect! Now the heavens have just opened! Ha typical!

Break time in chorley! #landsendtojohnogroats #needawee

Making wonderful tracks....

First of all happy fathers day to my wonderful dad :)
Well we're now in Kendal for dinner, we set off from Telford yesterday morning and and finished in garstang last night, we're hoping (if this "Shap road" doesn't literally kill me with its TWELVE MILE HILL) we should be in Carlisle tonight! Poooped aint the word! Lol
So far today we've burned 2667 calories! And we're only half way! Ha ha I'll come back and have put weight on! Lol

Leah plodding up the shap fell, 10 miles of joy!! 1400 feet up! That dot in the distance is Leah.


Keep the donations coming, a fabulous family and a fabulous charity...

Not a bad days ride, shap fell just sapped the energy a bit....



How do everyone! :) what a day!!! Can definitely say we're knackered! we've cycled from garstang to above Carlisle! Whilst In-between enduring a foooooking mahooosive hill 12 miles up! (1400 ft above sea leval!) Think we both need a pat on the back for that one! Lol were aching from the tips of our fingers to the tips of our toes! But it's soooo worth it! Weirdly kept seeing shops, pubs, houses etc called Hollie! .... She keeping us going! Scotland tomorrow! :) xxxx
Well around 370 miles to go, so probably 4 :) loving It! But denying its tough! No worries about the bikes.. There holding up! Lol  
Caught!!!! ;) sorry Ben! X
All we've seen for miles!



 They made it to the scottish border!!!!! 








 Well that's it for the day! Today was fecking awful! So could of given up today! Hardest by far! But my god I have never seen views like it in my life!!!!!! Beautiful! Done from bottom of loch lomand to fort William! Now camping at the base of Ben Nevis :) BIG day tomorrow , need to get to Inverness but it's going to piss it down Thursday/Friday! So need to push on further! ... HELP!!!!!


Today was a tough day through the highlands but we made it to fort William. 180 miles to go......
Hoping to push on, start earlier-finish a bit later and try be done Thursday so friday a leisurely drive home. But time will tell as I hear Thursday weathers supposed to be horrendous!










http://www.justgiving.com/teamhollierides  

Come on guys!!! We want to finish tomorrow! 140 odd miles to go! We need to try and go over the 100 mark today as tomorrow our worst night mere!.... 40-50mph winds and 3 weeks worth of rain dumped on us! So please please share this link! Surely it deserves a few sponsors!?

 This is all we have left'!!!! Dig deep Leah cause this is gonna hurt!

17 miles to goooooooooooo x
http://www.justgiving.com/teamhollierides  

We are fecked and I mean proper fecked! Leah's broke down in tears.... In fact iv lost count of how many times she's broke down today but the ends in sight....

Well, that's it we're on our way home! 


We've cycled over 900 miles in a total of 9 days! We first started in April at lands end, in some of the worst weather that's been seen for years! I broke my bike on day one as I was hating it already! Ha! Day 4 arrived & I got the most awful news anyone could ever get... My dad was so ill they said he had days left.. So we drove home from Telford as quick as we could!... 

Thankfully my wonderful dad pulled through :), so we started again on Saturday, the weather was with us all the way! I loved it! I hated! I could have given up on day 4! Then today came and the buzz was there but the energy gone! Today was so hard! I cried my heart out on every hill! The pain was awful! But we bloody did it! Whoooooooooo I want to thank my amazing Ben for doing this with me! & keeping me going, thank you Rachael so much for putting in all your hard work on the 1st half, & a massive thanks to phill, who was basically our mum!!!!!!! 

But you can't forget why we did this!... For my Hollie! She's the one who goes through more than anyone could imagine! Hollie your a star and the bravest person I know! Love you xxxxx

 Keep these wonderful people in your thoughts....
 


Thursday 19 April 2012

DONT forget the grown ups...

**UPDATED**

Posted by his brother Bryce a little earlier:

We Lost Bruce this morning he went to be with mom.I am sad to let him go but he is no longer suffering and I feel a sence of relief to know that he is no longer in pain.It has been a long 3 weeks that he has been in Nursing Home and was fighting the whole time because that is how he was.I am so proud to be his Brother. Funeral arrangments are pending at Copher-Fesler-May Funeral Home.


In the past 14 years he has fought 33 cancers. In May he had his right arm amputated because of cancer. Aged 46yr heaven gained a warrior!

 
I am quite sad today to be honest!! I cant stop thinking about the grown ups with Eb.
Those teenagers and adults that are overlooked or seen as "strong enough to cope"...Eb is Eb, no matter who has it, severity or what type........

We must be helping the WHOLE community deal with everday life and struggles. 

So today my blog is dedicated to YOU!!

"Got my first box of supplies from National Rehab! It's like christmas"



There are adults that have never had the correct dressings or creams, simply cos they didnt know what they needed or even what their medical insurance would pay for. There are also those adults who have just gotten worse with age and are unable to do the things they are custom to doing, which for me is very sad.

So many are saying about: 
  • Major throat problems, breathing, swollowing, eating 
  • Huge blisters that have formed at the back of the throat causing HUGE amounts of pain 
  • Having to bandage area's that have never been a problem
  • Unable to walk due to wounds on their feet that won't heal from dealing with their little ones around the house. 
  • Not to mention eye abrasions caused by simply opening an oven when cooking for their families.

These ADULTS still must wake up each morning, run around after families, go to work and more often causing themselves damage just living day to day.

Not to mention the level of stress caused when they chose to start a family...Will my baby have EB?? How will my body/skin cope with pregnancy?? Am i doing the right thing??

Imagine living this fear for 9 whole months........??

Then those parents who have passed their Eb on to their child, Blame & Guilt.
This makes me upset as we are born to reproduce and its our human right to do so. 
Unfortunatly the only way to know you wont pass Eb on to a child is with IVF, but this is only available IF you know the mutation of your own Eb. And most of the time IVF is either too expensive or not available. 

"I admire each and every one of you"


For those living in the UK, yes we have the Benefits system, NHS and Discrimination laws to allow a "Normal" lifestyle but it still goes on behind closed doors. 
Those living in the STATES, they have Welfare but its such a battle to get it and often not enough to cover "Paying" for medical insurance or those things the insurance doesnt cover. 
Employer's have loopholes to get out of giving you a job or even for firing you cos you need to wear "Slippers" at work which i have heard about. Because of these loopholes it makes it hard to place discrimination law's.


Everyday life is a battle, whether its about going to school, college, finding a job or about discrimination from employers or peers. It shouldnt be like this.
School leavers not being encouraged to follow their dreams or even being completely put off from doing certain courses at college cos they believe a job will never become available to them with having Eb.

"My skin is getting worse, but it is stress so I just need to live with it"


Some quotes from adult butterflies :

  • "There are some things I am happy to miss out on, "I can't iron" for example. But other things I have to make the decision that I know I am going to suffer and is it worth it?... Like dancing, one of my most favourite things to do"
  • "Also silly things, like having to ask someone to open a bottle or jar and hating that they will see you as weak, even though the reason is because the skin has sheared on your hands"
  • "Stumbling a lot because you can't get balance on your blisters or new ones are coming up, and people thinking you are clumsy or drunk"
  • "Eating out and crying in restaurants because the chef has changed one ingredient in something that is normally ok but this time, that one change causes blistering and burning"
  • "The way some people look at me when I use my bus pass as they can't see any of the things that are "wrong" with me"
  • "Employment challenges. I'm too healthy for SSI, but not healthy enough to just work any job
  • "Those grown ups were once babies... Lets never forget them!!!"
  • "I know MANY adults who don't have access to the same things the wee ones do also.. or maybe don't know about the advances since we were kids back in the 70s and 80s. Don't just reach out to the new moms and dads. Reach out to us, too"

There are so many things i could talk about but im guessing you dont have a few hours to sit and read it all lol 





Please take the time each day to ask our grown ups if they need any help with anything......


Saturday 14 April 2012

Eb Adverts ~ How Life Feels To Butterflies

This photography has one of the BEST visuals for explaining how every day "child's play & life" can be very painful for our EB butterflies

How Life Feels To A Butterfly

www.behance.net/gallery/How-Life-Feels-To-Butterfly-Kids/913126