Kara's Story
Kara, our 10 year old daughter, is the eldest of 3 children, and was born into pretty boring family histories of good health. We had no idea that I had the mitochondrial defective gene that was to lay our future on such an uncertain path!
Kara’s “uniqueness” became obvious when she started school in 2005. Her slowness to complete work, her poor balance and ever poorer sporting skills made Kara simply seem “hard work”!
The excess body hair, early loss of teeth, her slowness in all tasks, repeated spontaneous vomits, plummeting percentile bands, an awkward running style, stiff muscles, “stick legs”, stress incontinence (we were scared to make her laugh!), jerky eye movements, poor concentration, and a “failed” OT (occupational therapy) assessment, should have rung a few mitochondrial bells if I had heard of it at all!! I’m ashamed to say it, but I’m even medically trained myself!! My husband and I had a favourite phrase, “THAT’S KARA!”
Straight after turning 8, I found her one morning semiconscious and vomiting in bed. A bad gastro seemed the most obvious to me, not her first MELAS* attack. The diagnosis was quick, the history now obvious, and unfortunately the attacks frequent (approx 10 by now). No one can predict the precise path of any MELAS patient, but Kara starting on the younger end has the poorer life expectancy of mid teens.
With a brain scan that looks “moth eaten”, we are extremely blessed that Kara looks as well as she does. Kara’s own determination has driven her to be where she is, and every now and then we see glimpses of brilliance and can’t help but think of her lost potential. She wanted to try everything, read everything, help everyone, and looked for extra homework, which kept her near the top of the class till the first attack. School is now a social drop in place, as simple tiredness has triggered her last 3 attacks. Her motivation to learn is a fading light, early dementia has now set in, she has become increasingly unsteady, even slower in all daily tasks, her hearing now requires aids, her eyesight is slowly disappearing, and her personality is regressing along with her social graces. We can do little except watch our gorgeous girl disappear bit by bit.
Thankfully Kara has no real insight to what MELAS means, unfortunately her 9yr old brother does, and the 3yr old sister is yet to learn. She is an extremely happy girl, full of love and still cares for others. She recently donated a $1000 worth of toys she won to the kids ward she frequents, because she was “worried about the sick kids with broken legs”!?
To say your child has leukaemia or a brain tumour provides a fairly good image of what this means, but to say your child has MELAS provides confusion. It is a path even us as a family just barely understand. A path that takes away all their basic skills, leaving little for your child to enjoy. I might be the beginning of the gene, but Kara is not the end either, as my son is positive also and just starting with fatigue and weakness issues. MELAS provides no hope, but Kara’s hope comes from the love we and God can provide her.
6th August 2009
*Mitochondrial Encephalopathy, Lactic Acidosis and Stroke-like Episodes
Support Kara's fundraising efforts as part of Stay in Bed Day - click here.