Student Saarah Ahmed suffered with Ehler’s Danlos syndrome (EDS), an inherited connective tissues disorder affecting skin, tendons, ligaments, blood vessels, internal organs and bones.
She died suddenly on Tuesday, after using her platform to speak out on her illness.
Her proud mum Shefaly Begum now wants to continue Saarah’s mission to educate people about EDS.
Saarah, from Carlisle, Cumbria, was a former Trinity School pupil, and was studying sociology and psychology A-levels.
Shefaly said: “Saarah was determined to raise awareness about hidden disabilities such as EDS.
“That’s what motivated her when she became a finalist in Miss Universe Great Britain.
“She was a beautiful person – caring and wise beyond her years. She had so much wisdom. She wanted to go to university to study neurology. She wanted to help other people.
She had major surgery as a teenager to correct a spinal curvature.
“There are only 15 people living with my condition in the UK. My condition affects every part of my body.
“Some problems I face are my bones dislocating every day; extreme pain; heart problems; and curvature of the spine and I’ve have many surgeries to correct that.
“Just to get out of bed is a huge struggle for me. Although it will be a very tough journey, I want to prove to everyone that I’m able to do this too.
Saarah died away at Freeman Hospital in Newcastle having suffered liver failure and severe colitis.