~ More about Tayla ~
~ More about Breanna ~
~ Meet the Overfields ~
~ The Amazing Gregory ~
~ Photos ~
~ Light-a-Candle ~
~ Send us an email! ~
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Poems:
~ A Very Special Day ~
~ Mummy's Pain ~
~ Garden of Heaven ~
~ I'm an Angel Now ~
~ To Tayla ~
~ Sad Day ~
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Recommended sites:
~ Aussie Mito ~
(Great Australian site for Aussies searching for support and info about mitochondrial disorders)
~ Gateway to Neurology ~ (Massachusets General Hospital forum - good to share stories and get ideas for support and care)
~ United Mitochondrial Disease Foundation ~
(info on research, parent networking, newsletters, etc)
When we first found Tayla had elevated lactic acid (lactic acidosis) we searched for any information we could find and, despite a few clinical; sites, couldn't find any more personal information such as from parents of such children.
Even when we had a definite diagnosis of pyruvate dehydrogenase deficiency (PDH) we still had trouble finding anything much.; We were lucky enough to find (or they found us!) a family in Rochester, New York who have a child with a similar disorder. At least then we could share the worries we had and compare stories with someone going through almost the same day to day struggles we were. We have remained good friends to this day. We all agree our meeting has helped all of us through some of the most difficult times of our lives.
So ... we are only amateurs at this but at least if someone stumbles across this site we can share our experiences and give other parents some kind of support ... we hope. The fact our daughter is no longer with us doesn't mean we won't correspond with someone who has a child with a similar disorder. We are by no means experts in the mitochondrial field so cannot offer advice in that regard but are more than happy to share our experiences - good and bad.
We would also like to thank the many family and friends who have been there for us throughout Tayla's life ... and her death. The families of both Tom and I have been very supportive and have helped in every way that they could.
