A giant butterfly named Binky was paraded around the streets of London on a bus last week to raise awareness for a rare skin disease.
Sohana Collins, 11, from Barnsbury, suffers from Epidermolysis Bullosa (EB), a condition that causes internal and external blistering and skin loss at the slightest friction.
As part of EB awareness week which took place between October 25-31. Sohana and friends set out to educate people about the condition and promote the Sohana Research Fund which was set up by her parents Sharmilla and James.
Sohana’s mother Mrs Collins, said: “EB is a very painful, very debilitating condition that requires extensive hospital management and care.”
“We are gently reminding the government during EB awareness week that our children deserve a right to life too and a life free from pain.
“If promising treatments come through we absolutely need the government to help at that stage.”
The butterfly is the symbol most commonly associated with EB, because of the delicate nature of the skin of sufferers.
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here