Sohana Research Fund
Event: sharmila nikapota's fundraising
£1,585,638.56 raised of £5,000,000.00 target
£1,585,638.56 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
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.
Sharmila and James (Sohana's parents)
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.
Sohana, you are a very brave girl and your strength is inspiring. Keep smiling.x
Donation by Anonymous on 07/10/12
Donation by Jane Hucker on 04/10/12
To a lovely brave girl and her family
Donation by Julia Lambert on 01/10/12
+ £6.25 Gift Aid
Sohana is beautiful girl with a remarkable spirit. Love and wishes, Ranil and Manisha Abeysinghe
Donation by Ranil Abeysinghe on 18/09/12
Donation by Simon Collins on 12/09/12
Warmest wishes and all the luck in the world to your lovely family
Donation by Kate on 09/09/12
+ £7.50 Gift Aid
Donation by Anonymous on 07/09/12
+ £5.50 Gift Aid
Donation by Anonymous on 02/09/12
+ £5.00 Gift Aid
My thoughts are with Sohana and all the family. Wishing you all the best Love from Elsie X
Donation by Elsie Robinson on 28/08/12
Donation by Cristina Mendes on 24/08/12
Donation by Anonymous on 18/08/12
I know that is not much, but hope it may help. Wish all the success to the research and to Sohana.
Donation by Marcos Chien and Family on 17/08/12
Peço ao Senhor Jesus, ao qual nada é impossível, que ouça minhas orações ! Um beijo pequena! Desejo, de todo meu coração, vê-la curada !
Donation by valdecir custodio on 17/08/12
We wish success to the reseach and best wishes to Sohana
Donation by Rosane Becker on 17/08/12
With love and hope!
Donation by Anderson A. Martins on 17/08/12
Donation by Anonymous on 17/08/12
Good luck! I'm from Brazil and I'm rooting for finding a cure.
Donation by odilon junior on 17/08/12
Donation by Carlos Guilherme Kremer on 17/08/12
praying for you. Good luck, and mommy never give up
Donation by Marina Curvelo on 17/08/12
Donation by Sergio Dasilva on 17/08/12
good luck pretty litle girl. Trust in God. Kisses.
Donation by rosemary calheiros on 17/08/12
Donation by Anonymous on 17/08/12
Donation by Flavia Rolim on 17/08/12
Donation by Rebecca Marchewka on 15/08/12
+ £2.50 Gift Aid
Donation by FC on 04/08/12
+ £12.50 Gift Aid
- * 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.