Six-year-old Abbi Bennett has a rare-muscle wasting condition, which causes her muscles to weaken and waste over time, leading to increasing and severe disability.
She is one of 70,000 children and adults with some form of Muscular Dystrophy.
Parents, campaigners and MPs are working to speed up access to rare disease drugs to treat but not yet cure this.
Parents fear that the ‘race against time’ for their children to be treated may be lost through delays in licensing these treatments.
MPs last year published a report which revealed hundreds of children with life-shortening conditions could face waits for treatments.
Early-stage trials into a potential treatment for Abbi’s condition are beginning in the US and her parents hope further trials might be held here.
Even a year could see a significant deterioration in Abbi’s muscles. She can now just about walk ten metres but next year it might only be two.
The Bennetts understandably stress that any safe and effective treatment needs to reach their daughter urgently. They fear that it might take a decade for Abbi to benefit from potential treatments.
Along with the active Muscular Dystrophy campaign, I took Abbi’s father to meet health minister Earl Howe.
This issue is cross-party and humanitarian. The minister was sympathetic and myself and other MPs will help keep up the pressure for the sake of Abbi and all those affected by this cruel disease.