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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Dear Sharmila, Sending your lovely daughter much love and light Rosh x

Donation by Roshanara Dias on 01/03/13

$50.00

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Donation by JP (friend of Ash & Leonie) on 23/02/13

£50.00

Donation by reuben wu on 22/02/13

£10.00

+ £2.50 Gift Aid

Donation by Tom Ford on 18/02/13

£150.00

+ £37.50 Gift Aid

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wishing you all the best with your fundraising

Donation by KP & AW on 26/01/13

£100.00

+ £25.00 Gift Aid

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I had never heard of EB before I watched your video and it touched me. Good luck in reaching your target :)

Donation by Gary Aspinall on 16/01/13

happy Christmas and good luck with the appeal

Donation by renee williams on 22/12/12

Merry Christmas to the Collins family. lots of love xx

Donation by suzy taylor on 16/12/12

£30.00

+ £7.50 Gift Aid

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Happy Christmas Sohana. Good luck with reaching your target.

Donation by Victoria Pearce on 13/12/12

£10.00

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Happy Christmas Sohana! From someone who shares your birthday, with love.

Donation by Julie Butterworth on 13/12/12

£20.00

+ £5.00 Gift Aid

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Wishing you all a very happy Christmas and best of luck with the appeal.

Donation by Chris Fletcher on 12/12/12

£100.00

+ £25.00 Gift Aid

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Wishing you luck in reaching the target to help your brave, beautiful little girl.

Donation by Jane Herring on 06/12/12

£100.00

+ £25.00 Gift Aid

Donation by Anonymous on 27/11/12

£100.00

+ £25.00 Gift Aid

Donation by Annabelle Wheeler on 22/11/12

£100.00

+ £25.00 Gift Aid

Donation by Iskander Adinayev on 22/11/12

£5.00

+ £1.25 Gift Aid

Donation by Anonymous on 21/11/12

£10.00

+ £2.50 Gift Aid

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I wish you and your family every success in reaching your target. My best wishes to Sohana, a very brave little girl

Donation by Julie Mullins on 21/11/12

£20.00

+ £5.00 Gift Aid

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Amazing little girl. Hope you reach the target soon and help Sohana's quality of life

Donation by Isobel Woods on 20/11/12

Donation by Phil Vintin on 20/11/12

£10.00

+ £2.50 Gift Aid

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Wish Asther could play La Gavotta like that! Brilliant! Love Catrina & Asther Bratley

Donation by Catrina Holme on 16/11/12

£25.00

+ £6.25 Gift Aid

Donation by Rebecca Stripe on 15/11/12

£50.00

Donation by Anonymous on 15/11/12

£50.00

+ £12.50 Gift Aid

Donation by Anonymous on 14/11/12

£5.00

+ £1.25 Gift Aid

Donation by Anonymous on 14/11/12

£5.00

+ £1.25 Gift Aid

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We raised this money for our salons Open Evening. We saw you on This Morning and felt it was such a good cause. Your a little star.

Donation by The Beauty Rooms Lewes on 18/10/12

£275.00

Donation summary

  • * Online donations£42,228.90
  • Offline donations£1,543,409.66
  • Text donations£0.00
  • Total raised£1,585,638.56
  • Gift Aid£8,499.12

* Charities pay a small fee for our service. Find out how much it is and what we do for it.