Friday, 13 September 2013

Mission Possible ~ Lauren aged 17yr

"Mission Possible"

By Suzanne Altinkeser & The Butterfly Network Here2Help

Late one evening whilst checking in with our Epidermolysis Bullosa support group, i noticed a link featured down the side for WellChild Charity. After reading practically all their website, Lauren kept popping up in my head. She fitted the criteria perfectly! Excitement was flowing and I started about writing my nomination:

"Lauren is an absolute inspiration to me, at the age of 17yrs she has been through more than i could ever have coped with. Lauren mainly uses a wheelchair to get around outside as her skin cant tolerate any force or friction and her left foot is now like a ballet shoe....No bend or ankle. Her skin fused after repeated wounds. Her hands are also mittens now due to the same. She may undergo surgery again to give her somewhat fingers but due to the pain she must think long and hard about this. She must attend GOSH for medical care every 6 months and has DEBRA nurses attend her home in between, poked and prodded..But always with a smile on her face. She attends college with a carer and has showed them all that she CAN do what they expected her not to do. Right now she is making her plan for the future and wishes to be a specialist hospital play worker, helping sick/disabled children enjoy their hospital stay. Lauren has spent so much time in her short life on a hospital ward, i couldn't think of anyone more suited to this job. Although people are saying its not possible due to her condition, she is still focused on proving them wrong. She assists other patients and families afflicted with EB with her vast knowledge and a kind word. I would love nothing more than to show her just how special she is by nominating her to win this award. I hope you also feel the same way"

I copied and sent this to Lauren so she knew what i had written and asked her to let me know if she heard anything. Months went by and in all fairness i had completely forgotten about the nomination when the call came through.
Lauren won her category - Inspirational Young Person 16yr+ Female. To say i almost screamed down the phone at this poor women was an understatement, i couldn't stop giggling and was close to tears.

Took a few days to sink in that this was actually happening but then we were asked to attend filming for the awards, oh my goodness oh my goodness was all i could say. We met up at Laurens house with the film crew and separately made our video's, each coming back wiping away tears. I'm nervous to see the finished product and will absolutely be packing plenty of tissues.

 Myself and Lauren spoke often about dresses and how excited we were for the awards ceremony. She had expressed that for her high school prom she wore a dress she actually didn't want because she couldn't find the perfect dress. My mind went about 1000mph, i could find her the perfect dress as a present from my foundation

Lauren sent me a photo of a dress that she had fallen in love with and after a million calls to each store in the United Kingdom the dress was no longer available. My heart sank for her but i promised to keep looking and begged her to not attempt to purchase another one.

I shared this stress with a great friend in Portugal who then set about searching the internet for me, she found dresses similar but none quite like the one Lauren had chosen. I then shared again with another great friend in Australia, who is the founder of Jess also set about searching for this perfect dress. Whilst i was at work messages were coming through on my phone thick & fast. I had to take five to find out what the excitement was about. 

Jess had approached one of the designer stores in her home town of Noosa, Australia and had found the most perfect dress very similar to the one we were searching for. This amazing women agreed to allow us the dress at cost which was just amazing and a huge weight was lifted from my mind.

 Later that evening whilst speaking to Jess on Skype a text came on her phone, the owner of the store had gone home and checked out Epidermolysis Bullosa on the internet. She said she couldn't possibly imagine this being one of her daughters and was not only offering the dress as a donation, but to also alter it making it Eb friendly, taking out tags, straps placed on the inside of the dress material so it would not make contact with Laurens fragile skin. 

Both myself and Jess immediately broke down in tears, lots of tears!
Slowly everything was falling into place and all the while Lauren knew nothing of our secrets we called "Mission Possible". 
Another store in Noosa, Australia came forward offering accessories which was just amazing, her full outfit was almost completed.
My friend Cat from Portugal who i had shared this stress with earlier then came back to me saying she had spoken with a company right here in the United Kingdom, who had designed a specialist garment called WEB just for people with Epidermolysis Bullosa and they wanted to donate a full outfit to Lauren to wear under her dress so she would be comfortable and not worry about her wound dressings whilst attending the awards ceremony.
Ugg's donated the most amazing sparkly boots for Lauren to wear under her dress since she is unable to wear normal shoes.
Everything has come together so fast! Its so hard to explain the excitement we all have and with such hard work that's gone into making this day so perfect for Lauren and her family, we now just cant wait for the date to arrive.

 Dress fitting with her skinnies on:

 Tuesday 10th Sept, Lauren just left home for London....... Will meet her on the red (Purple) carpet tomorrow outside The Dorchester Hotel, Park Lane, London. Let the festivities begin!!

Wednesday 11th Sept, The evening has finally arrived, wow so much excitement!! Being at the front entrance seeing the paparazzi snapping anyone that moved was so strange, we headed up the carpet for the door and was escorted to the champagne reception. Seeing famous people around the room was just amazing but the sheer numbers of people that had come along to support such an amazing evening was outstanding and very humbling, supporting the Wellchild charity and the inspirational people who had won their awards.
Lauren at this point was with her mum, Nichola, in a private room meeting HRH Prince Harry.

 Champagne was flowing, crowd was buzzing with such a great atmosphere.
We were ushered into the main hall which was laid out so beautiful ready for the awards to start. I had to stand still for a second looking around just to take it all in, tables perfectly decorated, lighting so soft in pink & purple. Had to take a breath before locating our table with Lauren's sister, nephew and her father.

Vernon Kay & Tess Daley were our hosts for the evening and did such an amazing job, showing genuine interest and emotion for each winner.

Celebrities such as Rod Stewart & his wife Penny Lancaster, Comedian Tim Vine, Made in Chelsea stars Ollie Locke & Cheska Hull, Top Chef Ainsley Harriet, Superstar pop sensation Pixie Lott, Daybreak's Kate Garraway and of course our HRH Prince Harry amongst other top names awarding all the winners with their trophies. Pausing for photo's and to congratulate each on their amazing stories. Many tears were shed for each story. 

Pixie Lott congratulating Lauren on her award

 Kate Garraway congratulating Lauren on her award

 Vernon Kay congratulating Lauren on her award

 HRH Prince Harry with all the winners of a Wellchild award

Lauren's name was called out, every hair stood up on my arms. Glancing across the table at Nichola & Ian, Laurens mum & dad, both had tears in their eyes watching the video being played on the big screen for all to see. Lauren was just smiling from ear to ear! A very emotional moment as she walked on to the stage being greeted by celebs and treated as if she was royalty. I wished that moment would have lasted forever for her.......

Video's from the evening

Lauren's story and collecting her award on stage

Wellchild Awards 2013

2013 Winner of Inspirational Young Person's 16yr+ Female

All good things must come to an end but for myself, Lauren and her family, this memory will last forever.
A huge thank you to all who assisted and supported myself & Lauren. Words cant express how grateful i am, especially to Wellchild for this amazing opportunity to help Lauren shine as the most inspirational person i know. Lauren is a great friend to me and she will remain a HUGE STAR in my eyes forever.

Much love to all Xxx 

Friday, 16 August 2013

EB Camp UK Fundraiser

With the Launch of the foundation thebutterflynetworkhere2help my main passion has become getting our EB Camp in the United Kingdom firmly in motion. The company I have chosen are excited and eager to help with all the finer details to ensure this is a Camp to remember.

Due to my work load and family holiday, I will be viewing the sites in person late September. This is where I need the help from you, the supporters.

I have set up an online fundraiser so everyone can clearly see what monies have been raised and why they are being asked for. Go to link:
You can still donate via the website, and please remember every single penny counts! Nothing is too small and its all appreciated, not just from myself but from the Teenagers & families I will be taking to Camp.

I feel very strongly that having this opportunity is so important for both Eb Teen and for the families too. Giving them chance to meet others and share experiences. Whatever the Eb type, Im sure strong friendships will be built from this adventure.

The funds raised will pay for all activities, accommodation and meals along with some parent/sibling activities if possible. These children spend most of their lives wrapped in bandages and unable to join in with peers at school for fear of damage caused to their skin. I want this to be a memory they will never forget..

Please share, talk to friends & family about this... Together we really can make a huge difference!

Tuesday, 6 August 2013

Launch of The Butterfly Network Here2Help

Well its been a long time coming but we are finally here!! Still a few things to put in place and we are waiting on our number but dont see why we cant get a head start :)
  Our new Logo kindly donated by waynelemosdesign

 Let me show you around our new website:

You may notice especially if your viewing via a Pc or Laptop that we have pages and then sub pages... This allows us to give a better variety of information.

So under Welcome we also have Meet Us and Donate To Help and so on...

Let me explain a little about what and who we are...

As a team we want to welcome each and every one of you to The Butterfly Network Here 2 Help. Its been over a year in the making & planning. We can't put into words how it feels to have finally made our launch and to be helping in what we feel are the right places.

The Butterfly Network Here 2 Help, is a sister organization to The Official Butterfly Network which is founded by an amazing friend Kristina Wyatt. We are an unregistered foundation at present, waiting on our HMRC number to enable us to legally fund raise and move forward in assisting people and families around the world with Epidermolysis Bullosa. In time we want to claim full charity status but until that time, it's business as usual. Help us to help others!

We are a small team at present and we specialize in offering small donations IE: petrol to attend Eb clinics & cheer-up gifts for people in the Eb community. We are creating a Teens Eb Club, where we will have fabulous weekend breaks around the country (An example ~ London's West End with overnight stay at a hotel & show or museum) for member plus one carer. Our our biggest plan is to host the United Kingdom's very first Annual EB Camp, which we aim to hold September 2014, location & date TBA. Watch this space for updates and applications for Counselors.

The bigger charities ultimately focus on research for treatment and a cure for this "Worst condition you never heard of" which is desperately needed. But we felt compelled to do something for the here and now! And instead of just asking for donations or people to hold fund raisers in aid of us, we started selling Homemade Cards a while ago to raise funds.
These stunning cards will continue to be available via our Facebook page and the blog Some amazing gifts will also be added along with the cards very soon.

We manage an online forum Epidermolysis Bullosa Lounge which is worldwide and now home to over 1200 members from around the world. The Lounge is a place where people come together for advice, support and to just be a part of an amazing community. We have a large number of supporters that are with us to assist where possible.
On top of this new venture, we also have our full time jobs & families etc. So please bare with us for responses to emails.

Fundraising with GoGetFunding

Please feel free to contact us at anytime, share our website and donate or purchase our cards to help others in need.
Have a wonderful day and look forward to sharing this amazing journey with you all

Sunday, 4 August 2013

Hope in the community!!

I cried the day this picture was sent to me cos i couldnt change a thing or make it go away...

Today i cried so hard when i read THIS:

"He did it....Dr. Tolar did it. In the lab, they were able to use Charlie's own cells and "CORRECT" the dysfunctional gene which causes Epidermolysis Bullosa. Charlie's own cells are now producing col7 on their own (in the lab). Now, to give him back his OWN "corrected' cell back."

Charlie's Legacy......

In Charlie Knuth’s case, Big Data helped unlock the genetic code so that researchers could use molecular scissors to precisely cut out a single letter in his faulty genome and replace it with the correct one. Mark J. Osborn, an assistant professor at the U’s Pediatric Blood and Marrow Transplant Center, was the lead author in a recent peer-reviewed article in the journal Molecular Therapy describing the procedure.

The result: For the first time, Charlie’s skin cells began producing the “Type VII collagen” fibers that act like Velcro to anchor the skin in place.

Is this really the cure we have all waited for?! Charlie Knuth, I always knew you was special from the moment i laid eyes on you!

Trisha & Charlie with Dr Tolar
                           Right after they had just been given this amazing news!!

As posted by Jess Groff ~ Founder of Butterflysandbandages:

ATTENTION: I want you all to LISTEN UP each and every one of you stop what you are doing and read this NOW! The EB community today is given HOPE! A hope we all dream of each and everyday that goes by. A brake through in medical research that could change the lives of all children, adults and young adults all over the globe who suffer everyday. DR.TOLAR has made leaps and bounds and PUCK (Pioneering Unique Cures For Kids) is funding this research along with others. I am not asking you I am telling you all to get behind us, to make a difference and save the lives of those who suffer from EB. My organization Butterflys AndBandages for months now have been trying to get everyone's support to purchase a bloody ticket for $20.00. THIS IS WHY. We need your support. You are right now witnessing history in the making and you can be a part of this. Our fundraiser for EB is directly funding this. DIRECTLY. Money raised will be donated via I REFUSE and PUCK to help make this dream a reality for families around the globe FINDING A CURE. We are also supporting THE BUTTERFLY FUND (making a difference in the lives of those who suffer from EB) and THE JONNY KENNEDY NORTH EAST CHARITY (providing assistance to families in need). Now there is no excuse not to purchase a ticket there is no excuse not to get in there help us sell them, spread the word, share, scream from the hill tops dam it I don't care. My email is in to DR. TOLAR in the hopes maybe just maybe this could also help Ian. I HAVE HOPE UNDERSTAND ME HOPE. I will not give up hope. For a $20.00 and that's all it cost you yes that's right $20.00you to can be a part of this. Funding is vital to make this dream and reality. I am here everyday pushing and pushing and WHY you ask? because I know hundreds of families around the globe right now who are fighting for the lives of there children including my very own family. I did not embark on my own organization to sit on the side lines and watch. I started my organization and this fundraiser to make a true difference and I tell you what I am off to a roaring start. What you all don't see every day is what goes on behind the scenes. We are providing financial support where we can, we are assisting EB families to hospitals, helping to make life a bit easier, we are providing support to families who share the same struggles as mine. I spend every waking hour of everyday and night pushing and pushing to change something. I am surrounded by amazing people who to share the exact same dreams and hope. I am a fighter just like my Nephew Ian and I will not stop my fight and I will not stop annoying each and everyone of you to get involved. Buy a ticket help sell tickets, donate, spread the word. Do what ever you can do but all I ask is do something. Today when I saw the post made by a women I so greatly admire Trish about this amazing breakthrough I cried like a baby. I truly understand what this means to all EB Families. We have lost to many children, adults and young adults to EB this community has suffered enough. We Fight and We Fight and what for HOPE. TODAY HOPE IS ALIVE AND WELL. All I am asking is you get behind us fight with us lend a hand!

Saturday, 23 March 2013

Harry & Cody Churchill

Harry & Cody Churchill are two beautiful little boys that are very close to my heart and always will be. Harry was born 26th April 2009 and Cody was born 22nd June 2011. Both boys born with Junctional Epidermolysis Bullosa Herlitz (JEB-H) to amazing parents Steph Green & Chris Churchill. 

The world has watched these babies grow into beautiful toddlers...

Harry                                                                                          Cody

Doctors braced the family for the boys never seeing their 1st birthday since they have the most fatal type of Epidermolysis Bullosa (eb). But these boys were not taking anything lay down, beating all the odds thrown at them.

Harry had to have an emergency trachea fitted when he contracted chicken pox as a baby but he continued his battle and then Cody also had to have a trachea when he got sick. Their parents just got on with the 24 hour care of their son's without a whinge or moan. Hospital stays were long but they never gave up fighting for them. Stealing the hearts of thousands around the world and bringing every ounce of joy & laughter to their family & friends...

Then the devastating news was posted on Facebook which stopped my heartbeat and my breathe...

"As we all know Harry and Cody had a bond like no other but i don't think anyone really understood the bond they had! On the 13th march after long, hard fight Harry passed away peacefully at his favorite place Julia's house and as hard as it was we then had to go back to hospital as Cody had fallen ill. On the 15th march Cody flew to heaven to be with his big brother! Loosing two children in two days is anyone's worse nightmare, the only comfort we have is knowing they are reunited as one! Cody couldn't live with out harry their bond was far too strong 
♥ Love u always boys ♥ Mummy and Daddy x"

The sad news shocked the whole EB community, friends and family members alike. Messages pouring in for Steph, Chris, Natasha and the whole family from around the world.... "Beautiful angels, Inspirational & Too special for this world" were some words used to describe these gorgeous little boys.

Newspapers wrote moving stories in tribute: 

A fund raiser is in place to assist the family with the additional funeral costs like Flowers, Plot & Headstone:

"On behalf of the whole family, I would like to thank everyone for being here to support them at this terribly sad time. A huge thank you goes to the funeral directors for everything they are doing for the boys to ensure they are laid to sleep peacefully. And thank you from the bottom of my heart to each person who has donated, shared this page and/or left the most touching comments i have ever read for Steph, Chris, Harry, Cody & the family.
These boys sure were loved by all...

If you still wish to donate then use Paypal
(You don't need an account)

Many many thanks, love to all xxxx"

Keep the whole family in your thoughts as they say good night to Harry & Cody on Wednesday 27th March 2013 in a celebration of their lives.

Much love to you all

Saturday, 2 February 2013

Cards For Rhys Williams

Well the little guy that stole my heart has now also stole my sleep and train of thought since this coming week he will be having his G-tube operation amongst other things done at Birmingham Hospital, UK. I will be blogging his story so be sure to keep a look out for it....

I have created a page on behalf of the family to get some much needed cheer-me-up for Rhys, remember he is 7yr old with RDEB. You can also donate towards travel and living expenses for Rhys & his mummy as being away from home for 5 days will cripples their already low budget. Grandma is joining them as Daddy must stay home with their new baby Teegan.

Every £1.00 will help And every card will show Rhys how much he is loved by all. Having been through so much in his short life and now this... but we are hoping that having this fitted will get all the nutrients in him, making him healthier, which then will show in his skin. Please keep them all in your thoughts this coming week and always!

Please visit: Cards For Rhys

Sunday night snuggles with Rhys:

A quick update as just realized i hadn't posted here for a while:

Thank you to everyone for Rhys's well wishes some of u want to know what happened well ere goes.. we went down Monday he had a bath and the dermatologist said his skin was good to go ahead. So Tuesday mid morning Rhys was taken down to surgery and put to sleep about half an hour later I got a call from the ward asking me to go bk up where I was greeted by all who was looking after Rhys. Of course my heart sank :( but the dermatologist (who had said his skin was good) had decided once he was put to sleep that his skin was to bad. So my baby was put to sleep for no reason needless to say I was livid and I did voice my opinion and will be doing it again. He his due his op again in march/april.. once again thank you to everyone. Xx

This page will remain open until he has the surgery so feel free to share and continue to send cards ~ Sue @ TBN.

"My Bath time"


Much love from my family to yours xxx

Wednesday, 23 January 2013

An Urgent Appeal to anyone with a heart!!!

we petition the Obama administration to:

`Free wound care supplies for all Epidermolysis Bullosa - EB patients in the United States.

Epidermolysis Bullosa or Eb is a very rare genetic condition in which the skin and internal body linings blister at the slightest knock or rub, causing painful, open wounds. The risk of infection is so great that most severe cases have to completely bandage from neck to toe. The worst forms of EB lead to eventual disfigurement, disability and often early death.
The only treatment for EB is daily wound care and bandaging. The daily routine is a grueling, multi-faceted daily regimen lasting up to 4 hours in more severe patients. As part of your "Obamacare" Bill, it was stated "One of the main goals of ObamaCare is to ensure that all preventative care will be free on all insurance plans. These bandages we are requesting for free are exactly that, Preventative care.

Please sign, share and HELP make this happen..... This would be HUGE for our families

I will be writing in support of this petition, for anyone who wishes to also do so:
The White House
1600 Pennsylvania Avenue NW
Washington, DC 20500

Be sure to write the link to THIS petition on it.....

Much love!!

Sunday, 6 January 2013

Been a while...

 Happy New Year to everyone
 and i hope you all had a wonderful festive holiday.

A wonderful lady has created a channel and uploads new video's often, why not subscribe? You wont be disappointed...
"Electric Butterfly" 

I have struggled to create a new post so didnt bother with any ramblings that were of no interest. BUT since i have encountered so many problems regarding our EB Lounge, the policies of Facebook and the fact I, amongst others have been issued a 30 day ban from friend requesting, had photo's banned and been chastised for simply creating awareness for EB, i now believe its time to look forward.

I have a vision for our very own "Facebook"..... One where you can post whatever you like, talk about private things without sharing it to the world, locate a ton of EB information under one roof and have somewhere safe & secure for your whole family. Its all i wanted when i created the EB Lounge but after a very testing 2012 its just not stayed that way...

Yes, people keep saying its been done, it failed and what-not but i am a positive person. I see bright things when others see pitch black. Its happening as i type this, a wonderful team has been put together to make 2013 a HUGE year for our families. I am hoping you will stick with us and trust us as you have all this time.....

My love for the EB community doesnt stop when i log off the computer, even at work my mind is racing with idea's for a safer environment, thoughts going around the world for sick children or parents that are struggling to pay bills because of wounds so bad they cant work........

Please sign this petition in which i have created to TRY and get some movement for our American families who are forced to pay out HUGE amounts towards medical bills for life saving bandages, creams etc..
Together we make a much louder noise!! Sign, share & encourage others to do the same...
Many thanks :)

I see a bigger picture.......

 With thanks to Kristina Wyatt for the stunning art work

As posted By Eb Resource:

What is your family's EB story?
If you've thought about sharing it to educate others, consider starting a blog...

Much love to each of you!!