Raised so far: £1,347.00
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Hola! Welcome to my justgiving page. Today we are justgiving to DebRA. The national Epidermolysis Bullosa charity. Epidermolysis Bullosa is a genetic skin blistering condition. There are three main ‘types’ of EB and twenty seven clinical sub-types. The severity, presentation  and management of this condition depends on the ‘type’ of EB a person has. There is no known cure for this condition. DebRA provide advice and support to persons with EB and to their families. They run a dedicated research facility, constantly investigating treatments and the possibility of a future cure for EB.

I have been inspired to run the York 10K Run for All by a beautiful and awesome boy called Gabriel. In November last year I was employed as a care worker for Gabriel. Gabriel had Recessive Dystrophic Epidermolysis Bullosa. His blisters would often become open wounds which would scar as they healed. He had internal blistering and as such had digestive problems and difficulty swallowing. His knees and fingers were fused from scarring and he became less mobile as he grew older. He had a Gastric peg feed and primarily used a wheelchair for transport. Gabriel needed 24/7 support and care.

 I went to his home most evenings to help with his bathing and dressings (a lengthy and painful procedure), administering medications/pain relief and to prepare a vast array of medical supplies. I also quickly became his friend and confidante and his nemesis in great dramatic swashbuckling swordfights. I infuriated him with my awful singing and demands that he become my Spanish tutor. Gabriel always forgave these bad habits and we were never not friends for very long.

After a lengthy deterioration in Gabriel’s health he died in a beautiful and warm place called Martin House surrounded by the unconditional love and light of his parents and dedicated carers. Gabriel left his suffering body on the 25 of March 2010, he had been living in it just short of nine years.

I love Gabriel and I miss him. He was beautiful, kind, precocious, funny, sad, loving,  generous, quick-tempered, incredibly intelligent and SO SPANISH!

I miss his voice and the way he pronounced my name.

I miss the way he would flutter his big gorgeous eyelashes at me to get whatever he wanted.

I miss the way he would pout and squint his eyes if he didn’t get exactly what he wanted.

I miss lying down to watch a film with him and getting him ready for bed at night.

But for every time I may cry or the dull ache I feel in my heart when I miss him, I am engulfed in this incredible wave of gratitude and joyous love for having known Gabriel.

I am immeasurably thankful to Iris for having the grace and trust to allow me to become part of his life, and he a part of mine.  She is a wild, wonderful woman and mother who exudes selflessness and sincerity. Iris created a beautiful, tender and nurturing nest for her baby. Now that her little sparrow has flown the nest she continues to care for him anyway she can. Thank you for sharing Gabriel with me. Thank you.

Now, I know Gabriel may think it a little funny that I will be dragging my culo grande around York on the 1 of August with enthusiastic and seasoned runners but I am. Anybody who knows me will know exercise and I don’t exactly walk hand in hand together. We barely crawl. So please make it worth my while you lovely people and sponsor me. Any donation is welcome.  I’ll be sure to keep you updated on how it all goes.  Please feel free to forward this on to as many people as you like. People are kinder than you might think! I am grateful for your friendship and support.

Love and thanks.

http://www.debra.org.uk/

http://www.martinhouse.org.uk/

http://www.channel4.com/programmes/the-boy-whose-skin-fell-off/4od

http://www.youtube.com/user/fishergateschool#p/u/4/NI39LH655yc

 

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Well done Devin all at No.1 are very proud of you and you can be very proud of such a terrific achievement. Donation by JAMES CAMPBELL on 13/09/10

 
£50.00 + £14.10 Gift Aid
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Well done from Granny McAneaney, Auntie Jayne, Uncle Hugh, cousins Laura, Calvin, Kyle, Ellie, Little Jayne and baby Rachel. We R so Proud XXX Donation by Helen McMullan on 06/09/10

 
£70.00 + £19.74 Gift Aid
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Well done pet now sit back and let the olds spoil you for a little while.Your eloquence would have raised a tear in a glass eye,very proud to know yu Donation by Uncle Sean on 14/08/10

 
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Too late to wish you luck but I hope it all went well on the day. Fantastic that you've raised all this money. Donation by Sue Perutz on 13/08/10

 
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Well done Devin we knew you could do it. Lots of love Uncle Brendan and Auntie Rosaleen Donation by Brendan McMullan on 08/08/10

 
£20.00 + £5.64 Gift Aid
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Dear Devin, Amazing!! Well done! All the very best to you Caroline Atkinson (Children's community nurse to Gabriel) Donation by caroline atkinson on 05/08/10

 
£10.00 + £2.82 Gift Aid
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What an honour to have worked with such a beautiful child! Well done on the run too. Lots of love from all the Morrisons xx Donation by Julie-Anne Morrison on 04/08/10

 
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Well done Devin from Sandy Austin XX Donation by Sandra Austin on 02/08/10

 
£10.00 + £2.82 Gift Aid
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Well done Devin from Uncle Eugene Aunt Maggie and family.xo Donation by gareth mcmullan on 01/08/10

 
£25.00 + £7.05 Gift Aid
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What a kind and generous thing to do, well done Devin! Love Uncle Martin and Aunt Maureen x Donation by maureen mcmullan on 01/08/10

 
£25.00 + £7.05 Gift Aid
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Well done Devin, what a fantastic result, in both the 10k and the amount you have raised.Hope to catch up with you all at some point. 'Bout ye'!xx Donation by The Greenies on 01/08/10

 
£10.00 + £2.82 Gift Aid
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Your mum has to bring in cakes if you do this so i'm rooting for you. Robin gave 2 quid so I had to beat it with 5. Donation by Terry Hicks on 30/07/10

 
£7.00
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Good Luck from Uncle Jackie and Aunt Gladys and Valerie. Donation by Glayds Mitchell on 30/07/10

 
£20.00
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Devin You go for it, I will be thinking about you. Love Margaret and all the family xxx Donation by Margaret McGinley on 30/07/10

 
£30.00
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Well done Devin! Gabriel was such an amazing boy I can see why you are doing this!!! I hope you have a good time as well! Donation by Madeleine Kay on 30/07/10

 
£20.00 + £5.64 Gift Aid
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Good luck sis, try not to fall over Donation by Paddy McMullan on 29/07/10

 
£20.00 + £5.64 Gift Aid
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Good luck with the run, you are doing a good job. Donation by Geraldine Bell on 29/07/10

 
£10.00 + £2.82 Gift Aid
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Good Luck , from Mark and Amanda Page at Benson. Donation by Mark Page on 28/07/10

 
£15.00 + £4.23 Gift Aid
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I'll be running with youin my prayers, good luck and lots of love - Granny Donation by Elizabeth McMullan on 22/07/10

 
£40.00
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Good luck, bravewoman..... Donation by Macarena on 22/07/10

 
£50.00
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Thank you Devin. All the best Sebas. Donation by RdM on 19/07/10

 
£30.00
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Donation by PAOLO FIORAVANTI PAOLO on 17/07/10

 
£50.00
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As they say back home "run like the clappers!" All the best Devin, much love. Donation by Sarah Tonin on 17/07/10

 
£20.00
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Thank you. Donation by Otro amigo de la causa on 17/07/10

 
£50.00
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You´re doing a very nice thing, Devin. Really moving! Thanks. Donation by Juan Manuel Ayllón on 16/07/10

 
£25.00
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* Total raised online: £1,347.00
  Offline donations: £0.00
  Mobile donations: £0.00
  Total Raised: £1,347.00
  Gift Aid plus supplement: £211.54

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