This story of our family comes from New Zealand. My husband Jack, and I (Heather) were married in 1961 and had four healthy sons, Grant, Ross, Mark and Lance.

When our second son Ross was six years old we became concerned - symptoms like an awkward walk, sort of on his toes - and as a result he seemed clumsy at times.

However doctors couldn't find anything the matter and gradually his teachers at school were saying he wasn't concentrating on his work. After further tests he was diagnosed as having Measles Encephalitis and we were given no long term prognosis.

When Mark, our third son was six he also appeared to be showing similar signs as Ross and the Specialist told me I was an over-protective mother and nothing was the matter - in fact sent me around the corner to buy a book on 'Child Psychology'! We weren't happy with his comments and made an appointment to get a second opinion, and in fact this appointment was within a week of Ross's death. Further tests were undertaken and it wasn't long before Mark was diagnosed with Metachromatic Leukodystrophy, the same illness Ross had died of.

Both boys had been involved in sport and gymnastics and were normal healthy, happy six year old boys. Ross died in 1972 at the age of ten and Mark died in 1976 aged nine. Our other two boys, Grant and Lance are both carriers, and whilst it would have been great for them not to be so, it was a relief to know they couldn't get the disease.

Thirty years has passed since tragedy struck our family and we can still get very emotional over it - time does help but it can never take away the memories and sadness at the loss of a child.

It was just by chance we came across the Bethany's Hope Website and this is the first time we have ever had any contact with other families. The input that David and Lindey McIntyre are making into seeing that research is undertaken is to be highly commended - and who knows in future there may be some help or cure - wouldn't it be great.