Kate Jarman is fundraising for Barts and The London Charity

Harlequin Ichthyosis Trust

The Bowen and Betts sisters

Photos (1)

oh wow, you need to have Flash player installed and javascript enabled

Raising money for

Barts and The London Charity

Charity Registration No. 212563

We are the independent registered charity for the three hospitals of Barts and The London NHS Trust – Barts in the City (Britain’s oldest hospital, founded 1123), The Royal London, in Whitechapel, (founded 1740) and The London Chest, in Bethnal Green (founded 1848) - and their excellent schools of Medicine, Dentistry and Nursing. Charitable giving by patients, local communities and businesses has always played and will continue to play a vital role in our hospitals. Their support helps provide state of the art facilities and equipment; supports cutting-edge research and innovations in treatments and ensures the best possible standards for our patients, staff and local communities. The hospitals still rely on the generosity of donors and volunteering from people in our diverse local communities and from those further afield. The Charity’s vital work cannot continue without the help of people like you.

Page owner

Kate Jarman

Page closes

12/12/2008

RSS

Raised so far: £2,017.01

Donate now

My story

Thank you for visiting the fundraising page of the Harlequin Icthyosis Trust at Barts and the London Hospitals.Your support will make a significant difference to funding research and education on this condition.

Harlequin ichthyosis is the most severe and frequently lethal form of recessive congenital ichthyosis. The skin of babies born with this inherited condition forms thick hard diamond shaped plaques with deep fissures due to its inflexibility, which increases their susceptibility to infection. It may also cause the eyes, ears, mouth and other appendages to contract abnormally. This makes it difficult for them to feed. It is a rare condition that requires intensive care treatment. The survival rate of children born with this disease has improved over the years, but many will die within days of birth. Treatment will be required for their entire life. The impact of the condition on sufferers the Bowen sisters and the Betts sisters can be seen in the Channel 5 documentary 'The Girls With Too Much Skin'.

Research led by Professor David Kelsell of Barts and the London School of Medicine & Dentistry aims to develop treatment options; promote international research collaborations to strengthen investigations into this rare condition; make prenatal screening tests available; and disseminate clinical best practice.
For more information, please visit: www.bartsandthelondon.nhs.uk/charity/harlequin_ichthyosis_appeal.asp

Donating through this site is simple, fast and totally secure. It is also the most efficient way to sponsor me: Barts and The London Charity will receive your money faster and, if you are a UK taxpayer, an extra 28% in tax will be added to your gift at no cost to you. On behalf of all the children who will benefit, thank you once again for your support.

	Lara, Dana, Hannah and Lucy are a true inspiration, as are their loving parents! I hope this donation aids the ongoing research! Keep smiling x Donation by Jennifer 27/11/08	£140.00 + £39.49 Gift Aid
	A horrible disease bravely and cheerfully borne. Best wishes to the families. Donation by Michele A 26/08/08	£20.00
	These beautiful girls are a brilliant example of how brave young people can be. May we wish you the best of good luck in all your research endevours! Donation by Lily, Sabrina and Shane McGrath 08/08/08	£20.00
	The unconditional love of your parents is inspiring. The positivity of all and your fine sense of hu Donation by Adele Johnston 17/06/08	£30.00
	God bless you and be strong always! =D Donation by Lidya Dewi Harjono 06/06/08	£10.01
	We were deeply moved by the courage that not only the children have but also their parents, they are amazing people, our thoughts are with them all. Donation by Jack Tordoff 18/05/08	£5.00 + £1.41 Gift Aid
	These children have amazing courage. I have been very touched by them. Donation by Katie 31/03/08	£5.00 + £1.41 Gift Aid
	I have researched this on the net and cried at every picture and video clip I saw. Your Courage is astounding Donation by elizabeth e 22/03/08	£5.00 + £1.41 Gift Aid
	Very moving episode, I hope there is a breakthrough for you all. I hope there is a follow up showing progress. Best wishes. Donation by Martin G 20/03/08	£20.00 + £5.64 Gift Aid
	Hannah has my son's smile :) Donation by Dr Sam 20/03/08	£10.00
	Donation by A Jones 20/03/08	£10.00 + £2.82 Gift Aid
	Donation by Liz 20/03/08	£10.00 + £2.82 Gift Aid
	You couldn't wish for lovelier children. Donation by Anonymous 20/03/08	£20.00 + £5.64 Gift Aid
	Very brave, best wishes in the research. Donation by Martin L 20/03/08	£20.00 + £5.64 Gift Aid
	I was deeply moved & inspired by the girls, in the way they and their parents approached their lives. Donation by Michael L 20/03/08	£50.00 + £14.10 Gift Aid
	4 very brave amazing girls. x Donation by Emma T 20/03/08	£10.00 + £2.82 Gift Aid
	Please tell the girls how inspiring and wonderful they are, their parents must be very proud of them. Donation by Helen R 19/03/08	£10.00 + £2.82 Gift Aid
	Brave kids! Good luck to you! Donation by dane 19/03/08	£35.00 + £9.87 Gift Aid
	Long may the research continue and breakthroughs be found. Donation by Kim 19/03/08	£10.00 + £2.82 Gift Aid
	God Bless you. You should all be proud of your courage! Donation by Michele 19/03/08	£40.00
	Donation by Anonymous 19/03/08	£30.00 + £8.46 Gift Aid
	Donation by Anon 19/03/08	£50.00
	Donation by Tom Chivers 18/03/08	£5.00 + £1.41 Gift Aid
	God bless Donation by Carmen SanDiego 16/02/08	£5.00
	God bless you. My prayers are with you on your research into Harlequin ichthyosis Donation by Anonymous 03/10/07	£50.00 + £14.10 Gift Aid

Donate now

* Total raised online:	£620.01
Offline donations:	£1,397.00
Gift Aid plus supplement:	£122.69

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