Assya Shabir from Birmingham was born with the rare genetic skin condition, epidermolysis bullosa, which means is skin is prone to tearing and blistering at the lightest touch.
She defied doctors – who told her parents she would not survive more than 24 hours because of blisters on her organs and fragile skin tissue – is set to celebrate her 30th birthday.
She receives treatment regularly at Solihull hospital, one of only four places in the UK that offers treatment for adults living with the condition.
Miss Shabir is now intent on speaking out about her condition in efforts to raise awareness and to inspire others to embrace life and choose to adopt a positive attitude.
She explains: “I feel like I am completely blessed because this life is a test in my eyes.
“This is nothing. I could be much worse so I am thankful for everything I have. It’s all about patience and enjoying life.”
The optimistic individual recently raised almost £2,000 by taking part in a charity skydive for the hospice she credits with keeping her positive.
Acorns Children’s Hospice is a charity based organisation which provides care for the terminally ill as well as end of life care to children and young adults.
Assya also credits DEBRA, a national charity that supports individuals and families affected by epidermolysis bullosa (EB).
Despite being aware that the sky dive would aggravate her extremely sensitive skin, Assya felt compelled to defy her condition and take part.
Protecting herself with layers of bandages and thick creams before the dive, she explained: “I’m not going to change who I am, I need to just enjoy it really, I can’t be hiding behind EB for the rest of my life, I’ve done that for too long.”
After completing the jump, an exhilarated Assya proclaimed: “I just want to show everyone with EB, that you don’t have to stop because of your condition. Do what you want, how you want, when you want.”
So far she has raised nearly £2,000 pounds for her chosen charities and is continuing to inspire others to follow their dreams.
