The parents of Millie D’Cruz Parsley have set up a new national charity to help parents whose children suffer with the same degenerative condition.
Millie, who is now eight years old, suffers with Muscular Leukodystrophy, a neuerodegenerative condition, and has deteriorated so much she has been left bed-ridden, unable to even raise a smile.
Putting aside their own personal grief her parents, Twila D’Cruz and Phil Parsley have helped to set up MLD Support Association UK.
Dad Phil said: “We have all done a lot trying to get the treatment for Millie but we just couldn’t raise enough so we had to stop.
“She is in a poor way now, we didn’t expect her to deteriorate so rapidly. It has been mentally tough for us because you can’t help her, that hurts more than anything.”
Millie’s condition was first discovered when she was just five. A teacher told her parents that she had poor motor skills but Twila and Phil put it down to her age.
Millie was seen by doctors on a number of occasions but no obvious health problems were detected until medical professionals finally performed a brain scan in July 2010 which revealed MLD.
Her parents were later told had the condition been discovered six months earlier she would have been accepted on a gene therapy trial in Italy which has proven to have some success.
Phil and Twila are now hoping that the new charity can help other parents in the same situation, giving them somewhere to turn.
Phil said: “When Millie was diagnosed with MLD we didn’t know what to do. There was nowhere to turn for us in this country only a group in America.
“The new charity will aim to raise money and give families the chance to help each other and meet up to talk about it.
The charity already has a new website which went live last week available at www.mldsupportuk.org.uk.