Lutterworth teenager Abigail Hancock has spent most of her life in and out of Birmingham Children’s Hospital.
Now Abigail (17) has become a poster girl for the hospital’s big £3.65m Star Appeal.
Abigail and her family are calling for local residents to help the hospital create the UK’s first Rare Diseases Centre for children.
Abigail was first admitted to the hospital at eight months-old for an MRI scan after having epileptic fits.
Tests diagnosed a rare condition called Tuberous Sclerosis, which causes mainly non-cancerous tumours to develop all over the body.
Abigail herself is non-verbal and wheelchair-bound, but her mum Deborah said: “She is so inspirational – even though she has a rare disease it doesn’t stop her making the most of life.
“She enjoys music, listening to stories and being outside feeling the wind in her hair. She also loves spending time with our adorable family dog, Ruby.”
Doctors initially predicted that Abigail would only live into her early 20s.
“I won’t lie, life is challenging” said Deborah. “But when you love someone as much as I love Abigail, you go out of your way to keep them comfortable and to meet their needs.
“We’ve even moved house so we could accommodate her at home as that’s where we want her to be.”
Every year Birmingham Children’s Hospital treats more than 9,000 children living with over 500 rare or undiagnosed conditions.
The Star Appeal will provide a single place within the hospital for all assessment, diagnosis, treatment, information and research.
Abigail’s tumours have spread across her body, including the back of her eyes.
For more on the Appeal visit www.bch.org.uk/starappeal or watch the appeal’s video at www.youtube.com/watch?v=x1D-o2d0QtE