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Sohana Research Fund
$2,423,389.91 raised of $7,641,684.47 target
506 donations
My Target:
$7,641,684.47
$2,423,389.91 raised so far
How to make a donation
Donate online at - www.justgiving.com/SohanaResearchFund
By mobile internet Scan this code on your smartphone to go straight to sharmila nikapota's page.
By text message to donate £10 Text SOHA69 £10
to 70070
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 charity
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
Donation by A Thibaut on 20/05/12
£20.00
Thinking of you lots.
Donation by Beccy (Richard P's sister) on 20/05/12
Donation by Rod Muddle on 20/05/12
£20.00
+ £5.00 Gift Aid
Hope this helps a little
Donation by Juliet Clibborn on 20/05/12
£20.00
+ £5.00 Gift Aid
Best piece in the ST, should have been at the front. Your family are as inspiring in person as on the page, I'm only so sorry that you have to be.
Donation by Harriet on 20/05/12
£100.00
Donation by Michelle Wright on 20/05/12
Wishing Sohana and her family all the very best for the future.
Donation by Liz Castle on 20/05/12
Donation by Ruth Mccann on 20/05/12
£10.00
+ £2.50 Gift Aid
What a brave little girl and courageous family
Donation by Julie Walker on 20/05/12
£20.00
+ £5.00 Gift Aid
Touched by your story in the Sunday Times - Good Luck!
Donation by Sue on 20/05/12
£10.00
+ £2.50 Gift Aid
Donation by Felicia Bamgbose on 20/05/12
£10.00
+ £2.50 Gift Aid
Wishing a very special Sohana and her lovely family all the best. We hope a cure is found soon so that Sohana can learn how to ride a bicycle x
Donation by Ravinder Theara and Family on 20/05/12
£20.00
+ £5.00 Gift Aid
Donation by Becky Lehman on 20/05/12
£25.00
+ £6.25 Gift Aid
a fantastic little girl with a fantastic family
Donation by tony greig on 20/05/12
Read your article in Sunday Times. Wishing you every success. What a wonderful Mummy Sohana has.
Donation by Anonymous on 20/05/12
£100.00
Donation by Anonymous on 20/05/12
£5.00
+ £1.25 Gift Aid
Sohana sounds like a very special little girl. Please send her our love and best wishes. Jessica & Olivia xxx
Donation by Anonymous on 20/05/12
£20.00
+ £5.00 Gift Aid
Good luck with your fundraising. x
Donation by Mark Saunders on 20/05/12
Your daughter is an amazing little girl. x
Donation by Anonymous on 20/05/12
£10.00
+ £2.50 Gift Aid
Our thoughts are with you and we know that soon they will find something that helps. Peter & Pamela
Donation by Peter Carley on 20/05/12
£20.00
+ £5.00 Gift Aid
Donation by Anonymous on 20/05/12
£20.00
+ £5.00 Gift Aid
Donation by Peter Carley on 20/05/12
£20.00
+ £5.00 Gift Aid
As a sister of a wonderful 18 year old with severe special needs, I wish you strength and love.
Donation by Anonymous on 20/05/12
£5.00
+ £1.25 Gift Aid
Donation by Anonymous on 20/05/12
£10.00
+ £2.50 Gift Aid
Donation by Anonymous on 20/05/12
£20.00
+ £5.00 Gift Aid
Donation summary
- * Online donations$64,539.99
- Offline donations$2,358,849.93
- Text donations$0.00
- Total raised$2,423,389.91
- Gift Aid$12,989.52
* Charities pay a small fee for our service. Find out how much it is and what we do for it.
