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 http://www.thebutterflynetworkhere2help.com/

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 http://www.butterflysandbandages.org/. 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 http://www.angelsnoosa.com/ 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 http://pearlsforgirls.com.au/ 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, http://www.skinniesuk.com/ 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
#WellChildAward 

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