Sunday, 16 September 2012

Whats happening in our EB community??

Well its been a while since my last posting but felt there were a few stories i needed to share with you all.

Would love to share these amazing little boys... Harry & Cody

Their parents Steph & Chris fight every step of the way for what the boys need so it was lovely to hear they got some help without a fight.... The community came together when needed most. Builders, decorators and friends came in to completely make the new house ready to move into. Then friends set about to have the garden made over, giving the boys a safe place to play.....Look at the pics!

A lovely gift!!

Harry with daddy Holding the Olympic torch


Well back in May we said good bye to a sweet girl Rebecca Brewer as she lost her battle with EB. Family & friends alike were shocked by the news and an upset worldwide community came together.

RIP sweet Rebecca x


We also said goodbye to the sweetest little angel Chloe Lee Jones. She was born December 4th 2011 6 weeks early. She has one of the most fatal forms of EB. She weighted 3 pounds 15 ounces when she was born and weight almost 4 pounds 13 ounces when she passed away on March 24th 2012.

RIP Chloe Lee Jones

Some good news was the Debra America's PCC - Patient Care Conference 2012 held in Florida. Everyone had an amazing time, meeting other families coping with Eb and alot they had spoken to for the last 12 months on our very own Lounges - Eb Lounge, OPEN Group
Follow the link to see the amazing photgraphy taken by a wonderful lady Christie Zink:

Look forward to the next one in 2014........


Some beautiful news was that Courtney & Stephen got engaged!!! 

Wishing them all the best in their journey together...


An absolute must read for ALL

Kidowed by Jessica Kenley

In this book you'll find the the struggles, sorrows, and triumphs of the author after she has two children with a rare and universally fatal genetic disease.

In this book you'll find the the struggles, sorrows, and triumphs of the author after she has two children with a rare and universally fatal genetic disease. As she travels through her hellish journey, you will experience unexpected humor, endless love, and learn how strong one family can be while they walk beside her.

Kidowed is ranked #52 right now out of over 1 million ebooks on! 


One of our EB advocates Christie Zink, in the states has been nominated for "Women who shine - Activist"
The prize is $10,000 and I would LOVE nothing more than to give it back to EB community in some way. I just need all the help I can to get can only vote once and then done. As a winner, I would also be able to have a feature article done which I would again want to focus on the EB community. 

Christie Zink 
Category Activist

She's a dedicated advocate for EB Awareness and fundraising. Epidermolysis Bullosa, EB, is a rare and devastating connective tissue disorder that affects 1 in 50,000 live births. The slightest amount of friction can cause severe and excruciatingly painful blisters. She uses her photography business to offer pro-bono sessions for EB families. She has created countless videos for EB awareness, reaching several thousands! She started numerous Facebook groups and pages that help spread awareness. She singlehandedly created the successful 'I Refuse' campaign that has spread EB awareness across the country. She runs the site,, where she blogs and shares EB stories. She raised over $16,000 for to benefit Dr. Tolar and his research to cure EB. She's the first to offer help to new EB families. She attends countless EB events. She was the media advocate for Tripp Roth, ("EB"ing a Mommy). She took multiple trips to stay with the family, and organized many fundraisers. She was part of the "Save Jax" team creating national awareness to get Congress involved and Medicaid approved for his BMT. She attended the 2012 DebRA PCC as the DebRA photographer. The list goes on. She is an extraordinary woman who is generous and compassionate. She inspires many people, and donates so much of her time, all while maintaining a business, running a household, and being a loving wife, mother and friend. She is a blessing


An amazing guy!!
Posted by Zara Hogg:
My nutter of a brother in law (Darren Cooper) will run the first of 4 races: The Chester Marathon. This will be followed on 14 October with the Oxford Half Marathon, 20 October Weymouth 10, and finally 28 October The Great South Run. Darren is doing all of this for DebRA, the charity that supports sufferers of EB, a condition that my son Harry has. Please spare a few pennies and sponsor him.
On 7th October I will run the Chester Marathon

On 14th October I will run the Oxford Half Marathon

On 20th October I will run the Weymouth 10, and;

On 28th October I will run the Great South Run.

 October 25th-31st is EB awareness week
Around the world alot of fundraisers are being held but i am requesting one thing during this week. Please locate a family near YOU...Pop round and help out...Take some laundry, walk the dog, take other sibblings out to the park, make a meal, mow their lawn....You will not understand how these little things cause major stress.
Not too hard and will not cost you a penny! 
Just doing something will ease the burden for someone that would probably never ASK for help. 
Amazing news for all EB patients
  Irish biopharmaceutical giant Shire plc (NasdaqGS:SHPG) has agreed to acquire Lotus Tissue Repair, a biotech focused on the treatment of a rare genetic disease.
Cambridge-based Lotus Tissue Repair is developing a protein replacement therapy for the treatment of dystrophic epidermolysis bullosa (DEB). Shire’s acquisition of Lotus Tissue Repair, announced Tuesday, will enable the company to expand its focus on EB, a group of genetic conditions which cause the skin to be very fragile and to blister easily, according to Lotus investor Third Rock Ventures.
“This allows them to build out their franchise and have great capabilities for patients with this rare genetic disease,” Third Rock partner Neil Exter told Mass High Tech. “It is empowering for everyone at Third Rock.”
An estimated 50 of every one million live births are diagnosed with EB. Of those cases, approximately 5 percent, or 300,000, are DEB. Because the availability of patient information is what Lotus describes as a “major hurdle faced when researching rare genetic diseases,” the company is collaborating with DEB Research Association (DEBRA) International and DEBRA of America to develop the first international patient-reported registry for epidermolysis bullosa (EB).
The investment firm, which focuses on rare genetic disorders, started Lotus two years ago and invested $26 million in Lotus in June 2011. “What we found intriguing was the technology that came out of the labs Mei Chen of USC (USC Keck School of Medicine),” Exter said of the Lotus Tissue co-founder.
“This disease is a devastating disease,” he said. “Financially, there are good opportunities there, but you also have a great opportunity to interact (with patients) and see the hardships and this drives you further.” The company’s sole employee, Mark de Souza will move from his Cambridge office to Shire’s location in Lexington.
Lotus’ sale to Shire marks the second exit for Third Rock since it was founded in 2007. Third rock sold Cambridge-based Alnara Pharmaceuticals to Eli Lilly for $380 million in 2010. Alnara and Eli Lilly now have a potential cystic fibrosis drug under development. The potential treatment was rejected by the FDA last April.

Update more shortly x

Saturday, 12 May 2012

Love for Lucas

If your around Avon Lake OHIO this evening be sure to join the party.....

Love For Lucas 2012 Bowling Party

Event Pic 1
May 12, 2012 5:30 pm
Spevock’s Nautical Lanes
184 Miller Road, Avon Lake, OH 44012
(440) 933-7008

Join us on May 12 for a night of bowling, food, and fun to raise money and awareness in our battle against EB. The event is being held in our hometown of Avon Lake at Spevock’s Nautical Lanes. There will be raffles and silent auctions on numerous incredible items. Tickets are $25 per person, children age 10 and under free. Your ticket includes unlimited bowling, shoe rental, pizza, and pop. To purchase tickets or learn about sponsorship opportunities, please click here If you would like more information about the event please email Brian and Nicole Hardman at Please join our fight against the “worst disease you never heard of.” Please help the butterfly children fly free. Please EB part of the cure. 
The sun is shining and the birds are singing. The day is finally here. I can't wait to see all of our family, friends, and supporters. It's going to be an amazing event that will raise tons of money and awareness! Come join us tonight for bowling, food, and fun. LOVE FOR LUCAS 2012!


A Fabulous night had by all and amazingly raising over $30,000. 

Please see the link for full details... 

Friday, 11 May 2012

This one's for you momma's!!

May 13th 2012 is momma's day in America

Its been a difficult few weeks, not only for me but for the WHOLE momma population. Worries of not doing our best for the little people in our lives, worries for keeping them safe, out of harms way, wrapping them up too much or too little, future choices they may encounter and having them "Fit in" in this world.....

Not to mention the passing of some of our Eb Angels, so sad and too many numbers since xmas....Its heartbreaking. So please help us in our awareness campaigns you will find throughout my blog.

Why can't life just be simple?! Where would the fun be if it was....

You each amaze me in so many ways, not one selfless act or selfish word is ever seen in your posts and i want to celebrate YOU today.....Of course this also goes for all my other momma friends too!!
I have been sent alot of "Links" to some amazing momma's and i would like you to also meet them. You can visit their blogs simply by clicking their name.

Vanessa is just amazing! This beautiful family have just 'adopted' little Anton who suffers Eb. 
Vanessa posted on her blog recently: 

"Anton has adjusted so well, he has shocked us all with how well he is doing. 
He has bonded to Jason and I and looks to us to comfort him when he is upset. 
He LOVES Kenya and Judah and really enjoys playing with them.
He is the happiest kid EVER! He is never fussy (at home anyway) and just goes with the flow (for the most part)"

Im unsure of this mothers name but i MUST celebrate her in a huge way. This video is so moving, inspirational and beautiful.
Christian who was born blind has for sure been born into the perfect family that shows him unconditional love. People ask her why she didn't choose to abort her boy. They stare at both of them. They talk behind their back.
But none of that matters because this mother knows that her boy is beautiful just the way he is. Please be sure to read ever word his momma wrote...

I could talk to you for hours about this beautiful momma but i will just share a few bits with you. Courtney is Tripp's momma, Tripp was born on May 14, 2009 but sadly lost his battle with Junctional Eb in 'January 2012'. 
Courtney posted on her blog recently: "He couldn't talk and never in his short life spoke one word, but made me laugh and smile more than anyone ever has." 
Her story is just heartbreaking and still is.....

Melanie suffers from a rare skin condition Bullous Ichthyosis ~ EHK as does her daughter Rebecca. Daniel, her son is EHK-Free. Melanie blogged recently: 
"The reason I started my online blog was, not only to give an insight as to what living with Ichthyosis is like, but also to help raise awareness of the condition"

My P3's also are in my heart today as they always are. Such an amazing bunch of ladies that keep me smiling even when life is tough for them. Isn't it just lovely when you just need a rant or someone to say "everything will be fine" that you know JUST where to go. I don't need to name them, cos they know who they are!!
I honestly wish everyone had a group of friends like i have.......

For all my friends who have a child in heaven, i saw this earlier and wanted to share:

Dear Mr. Hallmark,

I am writing to you from heaven, and though it must appear
A rather strange idea, I see everything from here.
I just popped in to visit, your stores to find a card
A card of love for my mother, as this day for her is hard.

There must be some mistake I thought, every card you could imagine
Except I could not find a card, from a child who lives in heaven.
She is still a mother too, no matter where I reside
I had to leave, she understands, but oh the tears she's cried.

I thought that if I wrote you, that you would come to know
That though I live in heaven now, I still love my mother so.
She talks with me, and dreams with me; we still share laughter too,
Memories our way of speaking now, would you see what you could do?

My mother carries me in her heart, her tears she hides from sight.
She writes poems to honor me, sometimes far into the night
She plants flowers in my garden, there my living memory dwells
She writes to other grieving parents, trying to ease their pain as well.

So you see Mr. Hallmark, though I no longer live on earth
I must find a way, to remind her of her wonderous worth
She needs to be honored, and remembered too
Just as the children of earth will do.

Thank you Mr. Hallmark, I know you'll do your best
I have done all I can do; to you I'll leave the rest.
Find a way to tell her, how much she means to me
Until I can do it for myself, when she joins me in eternity.
Happy Momma's day to all my amazing momma friends....Have a wonderful weekend!

Saturday, 5 May 2012

Time to Fly 2012

Christie Zink....

Order your "I Refuse" kit and this will also be grant matched.......

Due to a generous grant from EBMRF and JGSF, every dollar raised for this event will be matched dollar for dollar and 100 percent goes to Dr. tolar' research!

As many of you know Epidermolysis Bullosa is something I have become somewhat passionate about. Not only do I try to be a proactive advocate, I am also very committed to raising awareness and helping any efforts to find a cure. This summer I have an opportunity to be a part of an event that will allow me to raise money for the research team in Minnesota.

PUCK (a parent driven initiative of Children's Caner Research Fund) was started and is run by parents whose daughters both suffered from Epidermolysis Bullosa, a devastating genetic skin disorder. Sarah died shortly before receiving her bone marrow transplant.

I will be walking to honor the memory of Tripp & Bella and also sweet Quinn who just lost her fight with EB on April 7, 2012. I hope that you will help me raise money for Pioneering Unique Cures for Kids (PUCK) and the research team at the University of Minnesota as I participate in this year's Time to Fly event on Harriet Island in St. Paul.

Your donation can make a tremendous impact in to those who suffer the devastating reality of EB.
And the wonderful thing is we recently received news that because of a grant that was received, all donations  made will be matched dollar for dollar.  That means that your donation will be doubled!
Thank you so much for your support and your dadication to helping in this fight against EB

It's Time to Fly!

On June 30 Team PUCK is joining the race against rare diseases like Epidermolysis Bullosa by participating in Time to Fly 2012 at Harriet Island Regional Park in St. Paul, Minnesota, which benefits Pioneering Unique Cures for Kids (PUCK).

Pioneering Unique Cures for Kids (PUCK)  invests in bold research that leads to life-saving treatments  for children who suffer from Epidermolysis Bullosa. We want to help raise money for this important cause.

Will you help us reach the finish line? Please make a donation or join in on the fun on June 30. Together, our support can help bring life-saving treatments to the children who suffer from this horrible disease, Epidermolysis Bullosa.

Whatever you can give will help - it all adds up!  We greatly appreciate your support and will keep you posted on our progress as we fight for these children. 

To learn more about Pioneering Unique Cures for Kids please visit

Posted by Christie a little while ago.....

I am just so incredibly overwhelmed by the outpouring of support that was given to Sharee Kinchen Wells who just helped me with an AMAZING fundraiser. I am totally speechless. Because of her dedication, she has helped raise $1942.72 for Pioneering Unique Cures for Kids (PUCK) and the Time to Fly Event. She has also just informed me that she has one extra surprise that can potentially put that donation over $2000! Keeping in mind that all donations are being matched due to the challenge grant, that means over $4000 will go to the research that is being done at the the U of M and Dr. Tolar. This is so incredible. With this donation, my fundraising efforts will be at almost $7000. My original goal was $2500!! Now I am eager to try to get to $10,000, which would mean $20,000! Will you help? 

5k Walk... 
I forgot to mention that Team PUCK raised more money than any other team. Of course everything raised is being matched and that means that more fun $50,000 will be going to Dr. Tolar and his research!!

Finished in 36 minutes...took first place for fundraising, finally got to meet some of my amazing online family, got to see some good friends and got to meet Dr. Tolar. I would say it was a pretty good day!!

 Well done to all who joined in.......

Thursday, 3 May 2012

Awareness & funds

You may have noticed a new little box on the right-hand side of my blog? >>

I have set up a direct payment page to raise funds for Debra.
A simple request asking for each reader to donate a teeny-tiny £1.00/$1.50

Every penny is paid directly to Debra Uk, its safe, secure and an amount that will not leave anyone feeling bad that they are unable to help towards.

On top of this, there will be a few events happening this year IE my daughter is doing a parachute jump with a team of friends. So your donation will be towards these things too.

or click the box top right corner

To text a donation:
To: 70070
Code: APYV70
Amount: £1, £2 or $1, $2 etc...

Thanks to everyone that joins in

Wednesday, 2 May 2012

Please HELP Logan & Cassie.........

 Please read this heart-breaking story:-

A parent's struggle to make his daughter's painful life more comfortable.

The only way Logan and his kids are going to get any much needed attention is if we keep sharing this story. I am so happy to see it has reached over 1600 people, but I know as a team, we can quadruple that- at least! Share it-re-post it-Like it-subscribe to it...You'll help an amazing family who deserves it so much and more than anyone I know! Thank you

UPDATE: In a whiplash-inducing turn of events, we are home. Due to a variety of factors that I'll detail when I'm not exhausted, our team decided that the risk of the PICC line outweighed the benefits at this time. We think that this infection might not have reached her blood yet and that she might be able to fight this off with wound care. But on the advice of our hematologist, hospice will now be involved in Cassie's care. Thank you everyone for the prayers, calls, texts, support




URGENT ~ Logan & Cassie are in NEED

As you may have heard Cassie is very unwell and was taken to the ER
Our Lady of the lake childrens hospital
5000 Hennessy Boulevard, Baton Rouge, LA 70808
 room 3240
She is being kept in for 7-10days

she's too swollen for them to find another iv site. But her white count is okay, so it looks like she's not septic yet. Hemoglobin was 7.9, Albumin 1.1 and pre Albumin 6.
Cassie is getting a picc line probably on Monday. She's too swollen to find a place to get a line in.
If anyone close by could help with any of the following please contact Logan, myself OR visit/send the hospital at above address

Well, our needs are financial, or meals brought to my house for Lilly Kirsten Manuel to feed the boys while we are here. 
I would really love a very very large thermos and Cassie would be thrilled with dvds or games for her DSi.

Any help would be greatful.......

Logan England of Baton Rouge, LA has so far 3565 Votes........This is approx 10,000 votes behind the leader. 

Please please please can we each vote daily!

A whole list of codes to use for voting, use a different code each day for your votes to count five times!: 

789, 881, 973, 974, 889, 972, 816, 813, 812

My daughter Cassie is 15 years old and has a genetic disorder called Recessive Dystrophic Epidermolysis Bullosa. This disorder causes the skin not to have anchoring fibrils which hold the layers together. Any friction or pressure on her skin can leave large blisters, or shear the skin off completely. Cassie's fingers have fused together, her knees are contracted, and walking is incredibly painful for her. Despite living in near constant pain Cassie is bright, talented, creative, and loves to hang out with her friends, go to the movies, and be like other girls her age.

Like all 15 year old girls, Cassie would love the independence of being able to use her electric wheelchair to get out of the house and participate in activities. Her electric wheelchair has multiple advantages over the push chair that she currently uses. Her electric wheelchair tilts to elevate her legs, alleviating edema in her legs and feet, it allows her the freedom to move around somewhat independently, and it allows her to participate in activities without having to move to other seating and risking injury to her skin.

It has special padded seats to keep shearing force on her skin to a minimum. She is currently unable to use her electric wheelchair outside of the home because of the need for a full size van to transport it to church, the mall, and to other activities. Having a van would open the world up to Cassie again. It would allow her some normalcy and fun in a life that is often very difficult for a fragile young woman to endure.

Lets pull together as a community and HELP this wonderful family............

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

To donate to the cycle challenge go to:
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. 

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!

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  

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....