Abbi Bennett’s has a rare muscle-wasting condition called Ullrich congenital muscular dystrophy.
She can walk but she cannot jump and she battles to get up after sitting. Sometimes even a strong gust of wind could knock Abbi’s frail little body over. Her muscles will weaken and waste over time and she will most likely use a wheelchair full-time through her teen years. And she’ll struggle to breathe unaided.
Abbi is one of Gary and Sarah Bennett’s four daughters. She was born in February 2008. Everything seemed fine at first and dad, Gary, was overjoyed in becoming a dad for the first time. However, when Abbi was a few months old she wasn’t gaining weight as she should and by six months she wasn’t crawling or pulling herself up as other babies do. Doctors were unable to tell them what was wrong and she was referred to the Birmingham Children’s Hospital. After various tests and a biopsy, in April 2011 Abbi was diagnosed with Ullrich congenital muscular dystrophy.
We were in total shock, mainly because nobody could really tell us about the condition or what we could expect for the future. Over the last two years, more information has become available and we know more about what we are dealing with, which makes it a little easier for us and for Abbi to accept and understand, said Gary.
Abbi is an intelligent and very determined little girl, who sees the best in life and in people, and copes with her condition in a way that is constantly commended by her peers and family alike. There is no cure, but scientists are working round the clock to try and develop the first treatments for this and other devastating muscle-wasting conditions.
With your help we can continue to fund research which could improve the lives of individuals living with conditions like Abbi’s.