My story

Sohana is a happy, positive 10 year old, despite having a very severe genetic skin condition called Recessive Dystrophic Epidermolysis Bullosa (RDEB). She is missing a vital protein cement (collagen 7) in her skin, making her incredibly fragile. This leads to skin loss or blistering at the slightest knock or rub. The condition is incredibly cruel and Sohana's type is progressive, life-threatening and very painful. Both external and internal skin are affected, so eating is always painful and if she suffers an abrasion to surface of her eyes, she is rendered temporarily blind. She lives an exhaustive routine of having blisters lanced, being covered in bandages, hospital visits and constant pain.

If you met Sohana, she would bounce up to you with a huge smile. You would hear about her plans for the future, hear her sing her favourite songs, describe her favourite book. She has a zest for life and a fierce determination to live life to the full, to find humour in its misfortunes and to wear optimism proudly on her chest. Behind her immensely brave happy smile however, lies a deep yearning to have even one day, one minute, one second, without pain.  

The Sohana Research Fund was set up by Sohana's parents and is working to raise funds on behalf of DebRA, the UK registered Charity for Epidermolysis Bulllosa (EB) sufferers, with a focus on research into effective treatments and eventually a cure for this devastating condition. The first Clinical trial funded by the Sohana Research Fund will start at Great Ormond Street Hospital later this year. 

The race is on to put further projects in place to achieve an effective treatment and cure for RDEB. We are humbled by your contributions thus far and the wonderful and kind messages that you have left. Your contribution will help make Sohana's dream a reality and the dreams of many other children living with the constant pain of RDEB. The research will also have benefits for other conditions such as burns.

Thank you

Sharmila and James (Sohana's parents)

 

My gallery 6

My Teams

My company

My charity

DEBRA

DEBRA

Charity Registration No. 1084958

DEBRA helps families affected by EB (Epidermolysis Bullosa), a genetic condition which causes the skin to blister and shear at the slightest friction. DEBRA provides a team of nurses and social care staff to work with families affected by EB and commissions world-leading research into the condition.

Donations 506

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Really pleased that last week's charity dinner was such an amazing success!

Donation by Edward Dix Perkin on 14/05/13

£50.00

+ £12.50 Gift Aid

Donation by Edward Brown and Laura Congi on 13/05/13

Donation by Elke Karskens & Tim Botterill on 10/05/13

£100.00

Donation by karen brade on 10/05/13

£500.00

+ £125.00 Gift Aid

Donation by Julien Codorniou on 09/05/13

£50.00

+ £12.50 Gift Aid

Thank you Will for letting us know!

Donation by Konstantinos Papamiltiadis on 09/05/13

£50.00

+ £12.50 Gift Aid

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Donation by Jamie HW on 07/05/13

£1,000.00

+ £250.00 Gift Aid

Donation by Simon Collins on 03/05/13

£75.00

Donation by Kevin Maxwell on 01/05/13

£250.00

+ £62.50 Gift Aid

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Saw your youtube video, very moving. Best of luck to achieve your target!

Donation by A well wisher on 30/04/13

£20.00

+ £5.00 Gift Aid

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We learnt about Sohana Research Fund via Tara Soning at St Christopher School. Thank you,Tara, and I hope that the medicine will be found very soon.

Donation by Oksana Fedosyeyeva on 30/04/13

£1,000.00

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Good luck Sohana and family, and thank you for your lovely opera ticket which was hugely appreciated. Good luck with the continued fundraising!

Donation by John Robb on 28/04/13

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Donation by Isabelle Irani on 03/04/13

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Good luck with the fundraising. Very sorry that we cannot make it to the fundraising dinner.

Donation by Mark Echlin on 02/04/13

£250.00

+ £62.50 Gift Aid

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Lots of love to Sohana ... Shami, Sharm & Saaya

Donation by Sharmani Perera on 27/03/13

£100.00

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Good Luck with the fundraising.

Donation by Vernon and Angela Flynn and Family on 25/03/13

£500.00

+ £125.00 Gift Aid

For Sohana and her family, congratulations on your sr school success! Best of luck for the rest of year 6. with love, Susan, Karen & Lily

Donation by Susan Crane & Karen Newman on 24/03/13

£120.00

+ £30.00 Gift Aid

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Good luck with reaching your target. I love the butterflies on your website :)

Donation by Sophie Woollen on 18/03/13

£50.00

+ £12.50 Gift Aid

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Happy Birthday Ester!

Donation by Sveta & Max on 17/03/13

£50.00

+ £12.50 Gift Aid

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Happy birthday Ester, with love from Cindy Penelope Vivienne and Bill

Donation by William Toong on 17/03/13

£100.00

+ £25.00 Gift Aid

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Happy Birthday, Ester!!!

Donation by Olga, Joe, Katya and William Proctor on 16/03/13

£100.00

+ £25.00 Gift Aid

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Happy Birthday Ester!

Donation by Ulf & Jurgita on 16/03/13

£50.00

+ £12.50 Gift Aid

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Happy Birthday Ester!

Donation by Barbara Corrias on 15/03/13

£100.00

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Many thanks and best wishes to Ester!

Donation by Jurgita, Milda, Vaiva and Valdas on 15/03/13

£200.00

+ £50.00 Gift Aid

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Greetings from downunder! Hoping this helps get you a bit closer to the goal. Hugs to all xx

Donation by Anoushka Perera on 04/03/13

$250.00

Donation summary

  • * Online donations$63,840.70
  • Offline donations$2,775,653.76
  • Text donations$0.00
  • Total raised$2,839,494.46
  • Gift Aid$12,848.78

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