Jill started the group 22 years ago when her daughter, Lucie was six years old.
There wasn’t any support network in this country for this extremely rare condition so with the help of Dr. John Wilson/Neurologist at Great Ormond Street Hospital in London, letters were sent to prominent Professors and Neurologists around the country. Our details were entered into’ The Contact a Family’ directory for rare diseases. We now have over 30 families in contact with each other.
Jill regulary travels to overseas conferences so that information can be shared with the families in the UK.