“Get on with it” … and climb a mountain!

“Get on with it” and climb a mountain…..

In just over 6 months we are taking part in our biggest challenge to date for both of us.

In October we are going to climb Kilimanjaro along with some very special friends of Sarahs.

We are climbing to raise money for DEBRA, the charity that supports sufferers of EB, an extremely painful, debilitating, cruel, genetic skin blistering condition also known as Butterfly skin because sufferers of EB have skin that is as fragile as a butterflies wing, and as of yet, there is no cure.

Why are we doing this? This is Sarah's story.

My son Oliver, was born with EB and courageously fought EB all his life. With huge amounts of determination, bravery, and support from DEBRA and the EB nurses, he soldiered his way through school, Uni and everything in between.

EB is relentless though, and in the end it got the better of him and by 2020 he had lost his mobility and in that same year he was diagnosed with terminal skin cancer, another cruel side to EB.  In Dec 2021 he lost his courageous fight, aged just 32 years. I will forever be so so proud of my soldier, Oliver.

Having got to know other parents of EB sufferers over the years I know that just like us, they are only too familiar with the pain, suffering and trauma EB causes to the sufferer and to their families. We all totally rely on DEBRA for the vital research they fund into working on a cure and to the essential support they give to sufferers and their families .

DEBRA supported us from Oliver’s first diagnosis right through until his last day.
Oliver was an absolute soldier. Every single day of his life he endured painful dressing changes and being wrapped in dressings for his protection. EB not only affects the skin but the eyes too  and it caused his beautiful blue eyes to scar, which led to near total blindness in his later years.

A mixture of the highest strength daily pain relief, an unbelievably strong, stoic, resilient persona, and love from his family, kept him going.

My challenge is in memory of Oliver and all the other EB sufferers we have known and sadly lost and it is my absolute mission to keep their memories alive, and in their honour to continue to raise as much awareness and money as I can, for vital funding to go towards the vital research that is needed which will lead to eradicating this awful condition forever.

I will be walking with some wonderful friends, a few of which are parents of EB sufferers who are going through what we went through with Oliver, and my heart is with them. We all have that same goal.

From Oliver I learnt what it means to keep going, with never a moan, and he has given me great strength and love. When he was first diagnosed with cancer I will never ever forget, he shrugged his shoulders in his usual courageous way and quietly said to me ,
“we'll just get on with it” those words are with me everyday.

So I will climb this mountain, alongside some wonderful friends .... it will be tough ...BUT not half as tough as having skin as fragile as a butterflies wing.
I will ‘get on with it’ as Oliver did everyday.
THANK YOU for reading my story and for supporting us.

Becky's story

I met Sarah a couple of months ago in my fitness classes at Colets Health Club where I am an instructor. She is always smiley, chatty and friendly and we hit it off instantly as both love a chat! To be fair we find it hard to get a word in edgeways with each other which is comical! I was aware that she had lost a son but I never really knew too much about Oliver and his condition until the last week or so when she asked me for some advice as a PT in terms of training as she was climbing Kilimanjaro in October for DEBRA.  Her story touched my heart in such a way that I knew that I wanted to help in more ways than just making her squat more and getting her fitter! She sent me the details and the next day, I had signed up, much to Sarah's shock as she couldn't believe I had made a decision so quickly. How could I not?!

I didn't know much about EB but the more I read and hear about it the harder it is pushing me to raise as much money as we possibly can for this charity and the incredible work they do. We are going to absolutely SMASH this, there is no doubt in my mind about it and with your support we can make a real difference.
Thank you so much.