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............