The 2nd March 1998 was a preordained moment when a higher
power decided to change my young family’s life beyond all recognition. Happily married for 12 years, two healthy sons aged 3 and 7, privileged to be a stay at home mum, enjoying taking care of our children and having a husband who loved us and worked very hard at our family business to provide a good life for us all.

Maybe not everyone’s choice … but most definitely a life we revelled in.

Fast forward 20 years to 2018, would I go back to that quiet family future we had planned in 1998… unequivocally yes! Do I regret having my very special son, how can I truthfully answer that whilst watching him suffer so much over the years, I guess it’s not regret but absolute heartache. I love him with every ounce of my being, but I cannot answer honestly whether, through his suffering, he is experiencing a fulfilled and happy life. We have provided Jake the very best possible outcome for someone suffering such a rare, complex, disabling brain disease…

This year 4 children (aged 7, 21,10 and 3) around the world have already lost their battle to this RARE brain disease; Aromatic Amino Acid Decarboxylase deficiency. On average we usually lose 3 a year.  We are one of the lucky few families, within this tiny affected WORLDWIDE community, who have responded very well to medication and for that we are truly thankful. This year we are calling our AADC Awareness campaign The BIG Blue Wave (to the spirits in the sky) in memory of ALL our children lost over the years to this horrific disease.

We’re always so very grateful for your backing and I know we ask you year on year to support our cause but that's because we still live the same nightmare year on year, its always with us, wherever we go, no leaving it behind, no time off, not even for a day...imagine that!

We’ll keep going, because one day we know, with your help, we WILL find a cure!

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