DONNA'S STORY

Donna was 21 in July and only got her diagnose 3 weeks before her 21st.  She has profound learning difficulties (mentally a 2-3 yr old), severe epilepsy, stopped walking at 15 (took her first steps at 5yrs, 4 months) and had to stop eating at 18 when she lost her gag reflex.  She has a lot of chest infections & needs regular suctioning and scoliosis.  She was originally diagnosed at 5 yrs old with cerebral palsy but told she wasn't a "typical cp kid" then told she was autistic (it was epilepsy drugs causing her behaviours) at 9 then by 11 she was starting to lose her walking and very floppy at times.  By 13 I was told she had some sort of progressive brain disease but no one knew what so went on the 10K project and after 18 months got diagnose of pdh and a epilepsy syndrome.  She is very happy and is very sociable.  She has repetitive speech and unfortunately at the minute her favourite word is "bugger" after her consultant calling her it in itu!!