If your around Avon Lake OHIO this evening be sure to join the party.....
Love For Lucas 2012 Bowling Party
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 LoveForLucasEB@gmail.com.
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!
WWW.LOVE4LUCAS.COM
A Fabulous night had by all and amazingly raising over $30,000.
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."
Melanie suffers from a rare skin condition Bullous Ichthyosis ~ EHKas 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!
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
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 www.puckfund.org.
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!!
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.
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
ʚϊɞ
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.
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............
