Our youngest daughter, Claire, was born on the 1st of March 1999. She flourished into a beautiful blonde haired, blue eyed little girl until the age of 18 months. This was the beginning of any parent's nightmare and heartache. We suddenly realized that Claire had stopped walking - but numerous visits to specialists told us that "She is manipulating you - she is so spoilt that she just wants to be carried" and "Oh she's perfect - just a slow walker" and finally "she has minimal C.P. - a few sessions of physio and she'll be fine."....these were children's specialists talking, and so of course, we believed them. When Claire lost her ability to stand unassisted our alarm bells rang again.

So we went in search of some pediatrician who could help us - of course, we were actually looking for some one who would dispel any fears we were starting to feel - things were not right with Claire. As a mother, I KNEW there was something terribly wrong - but as a mother, I also didn't want to BELIEVE that something terrible was wrong with my little girl. This is such a long story - one which has me in tears every time I recall the events - for now, I will just sum up the following events. By the age of 2 years, Claire could not walk, sit, stand unaided - she was, as specialists told us, suffering from cerebral palsy.

But I knew better - I knew that a child cannot become C.P. after 2 yeas of being "normal." Just after her second birthday , we took Claire to another pediatrician in another city - MRI's of brain and spine revealed all was fine, intense blood tests were all normal, but this pediatrician. called in his partner to break the news to us - unfortunately Claire did not have a tumor on the brain (at least we could have tried to have it removed and she would be fine - he had hoped) but her loss of abilities revealed to him that she had "one of those very rare diseases where nothing can be done, she will never walk and will probably die." DIE - our little girl, no, we would NOT accept this -how dare this man even suggest that she will never walk when all her tests were normal? We were devastated, in shock, and hated this man for this diagnosis. My husband, Grant and I, held Claire tightly in our arms as we cried all the way to the car park.

Once in the car, we phoned our family to tell them the news - absolute devastation by all, but yet we forced ourselves into denial. We would take Claire 600km away to a specialist in children's diseases - he would know better. We left the next day and during our trip, I noticed that Claire no longer pointed at the farm animals correctly on her favourite toy. Alarm bells rang again -and for the first time I realized that Claire could not SEE, but I hid this from my husband.

Our appointment arrived - this man, I promised myself, was going to give us a miracle cure, perhaps send us overseas to get Claire "better." But this was not to be- after examining her, he sat us down, and with tears in his eyes, he told us that Claire was seriously ill - that she was going to die - that he was sure she had one of the worst genetic disease - Metachromatic Leukodystrophy.

He said she would soon lose her ability to swallow and that we would have to feed her through a G tube. Grant and I had never heard of such a thing - feed a child through a tube - and we even said that we would NEVER allow that to happen to Claire. Sadly, 2 days later, Claire could no longer swallow and she started having the most terrible seizures I never thought were possible.

She was hospitalized, on a drip, heavily sedated until I requested a further MRI. This time it was clear - the brain showed clearly the effects of MLD. We brought Claire home - nursed her 24/7 and on the 24 March 2002, our little girl slipped away peacefully in my arms, surrounded by her family.

Dave and Lindey McIntyre - we salute you for all the care, empathy and guidance you gave to us across the seas. We lost our angel - but we gained the most wonderful friendship of 2 truly amazing people who had walked the road that we had just walked.

Today, 27 September 2004, Grant and I are delighted to say that we will be visiting Canada in April 2005 to attend the MLD Ball. We have been blessed by folk in Canada who have offered to host our stay in Canada -they are helping us reach our dream: to meet the McIntyre's and other MLD family.

Our darling little angel is at peace, we know, but our hearts continue to break as we long to hold her and love her again.

Fly free, little Butterfly, free from the pain and suffering you endured by this awful MLD.

We love you, Claire Bear.