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Rowena Hamilton

100KM Sahara Desert Trek- Charity Challenge

Total raised so far £0.00

Target £0.00

Total plus Gift Aid: £0.00

Raised offline: £0.00

My story

[p][br][/p][p]On the 10th November 2018 I will be trekking the Sahara Desert in Morocco. This is an 8 day challenge covering 100km for DEBRA, the official charity for people affected by and living with Epidermolysis Bullosa (EB). My reasoning behind this choice of charity is to raise awareness of EB and DEBRA. Personally I have been touched by this devastating condition therefore this expedition is to support the remarkable members of DEBRA and the wider EB community for those also who have sadly lost their battle with EB.[/p][p]Most of you will have never heard of EB, which is understandable as it’s so rare. There are roughly 5000 people in the UK with the condition! EB is a blistering skin condition where the skin has been described as ‘fragile as a butterfly’ as it can shear at the slightest touch. There are 3 different types of EB and within each type, there are various sub-types ranging from mild to severe. Sadly, in severe cases of EB, the disease affects them internally as well as externally and is an incredibly painful and progressive disease. There is no cure for EB and despite advances in research and clinical management, the prognosis for severe patients is very poor and in its severest form some babies do not even live to see their first birthday. [/p][p]Everyday they will suffer a daily routine of checking for blisters,lancing the fluid, applying dressings and creams this is only part of what they will go through. Typically those with severe EB are subjected to dressing changes, this is an extremely painful and traumatic experience that can take hours. The pain and suffering is unimaginable and therefore in most cases morphine is needed to cope with the excruciating pain. Babies born with generalised severe simplex usually are born without any skin at all with no warning to the parents, who bravely have to cope with their baby in such severe pain. At DEBRA we can help by being there for these parents and children and supporting them through these emotional and worrying days. There is so much more to say and talk about the different types of EB.[/p][p]My work with DEBRA as Area Community Support Manager has enabled me to reach out and support these individuals and their families in there need for professional advice and support. I honesty feel so privileged. My aim is to improve their quality of life through a varied support service we offer. I am amazed everyday at the strength and courage that these amazing people show through all the pain and suffering and have such energy for life. I am involved in so many families and every single individual has touched my heart and drives my passion to support those affected by EB.[/p][p]I am dedicating this Trek to a baby called Dylan who sadly lost his fight against EB at 3 months old. I had the privilege of supporting Dylan alongside his dedicated loving parents and amazing EB specialist nurses from Great Ormond Street hospital. Dylan suffered from Herlitz Junctional EB the most devastating type of EB. DEBRA was able to fund essential medical equipment, be with them for emotional support and advocacy. I was also responsible for ensuring they had everything they needed so they could spend their much needed time caring and making memories with Dylan. This support was not only for Dylan, but also his family and continues still to this day.[/p][p]For more infomation on Epidermolysis Bullosa and DEBRA please visit our website:[/p][p]www.debra.org.uk [/p][p]I will finish off with a massive THANK YOU! Please dig deep and donate. Watch out for NOVEMBER when I will be vlogging my journey across the desert. [/p][p](All the photos and personal stories on this page have been given with consent of the individual or family and I thank them for allowing me to share)[/p][vmgvideo class="ql-video" frameborder="0" allowfullscreen="true" src="https://www.youtube.com/embed/bwuzaZPR9P0?showinfo=0&rel=0&iv_load_policy=3"][/vmgvideo][p][br][/p]
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Share Rowena's story

Event

Personal Challenge Date

10 Nov 2018

Charity

Supporters

07-Jan-2019

Justine

Well done you xx

£10.00 plus £2.50 Gift Aid

18-Nov-2018

Judith and Colin Talbot

Well done on completing your trek! Thank you for dedicating it to our grandson. Xx

£50.00 plus £12.50 Gift Aid

16-Nov-2018

Suzie Farrant

Well done Ro, what an amazing achievement xx

£10.00 plus £2.50 Gift Aid

11-Nov-2018

Katie P

Good Luck Ro - love you xxxx

£30.00 plus £7.50 Gift Aid

09-Nov-2018

Sue and Rob Stevens. Good luck Rowena

£30.00

08-Nov-2018

Anonymous

Awesome lady x

£15.00 plus £3.75 Gift Aid

08-Nov-2018

Catherine Nye

Well done Rowena, you are amazing

£15.00 plus £3.75 Gift Aid

08-Nov-2018

Frances

Good luck, i am sure you will be AWESOME!!!

£10.00 plus £2.50 Gift Aid

03-Nov-2018

Anonymous

Good luck Rowena enjoy every mile

£20.00 plus £5.00 Gift Aid

03-Nov-2018

Linda and Paul

Good luck Rowena on your epic trek. You are amazing.

£50.00 plus £12.50 Gift Aid