I wanted to tell this true story about the life of my youngest daughter, Jeannita.
Nita, as we all call her, is the youngest of 5 children and has always had the nick-name “Sweet Neet”. Her life began precariously and very quickly back in June 1988, my bi-centennial baby. Her delivery was just thirty minutes long and put me into shock because of the speed she came into the world.
Her father and I had been told that his motor sensory disease would not be passed on to female babies, so we were very proud and happy to welcome her into our family.
As she grew taller, she began to complain of what we thought were simple ‘growing pains’ and, at the age of 12, she often couldn’t sleep because of her pain.
Still, she soldiered on at school, loving maths, science and really enjoying socialising with her friends and family, dealing with daily and nightly pain.
Then the muscle spasms began and, by the age of 16, the pain would become unbearable at times. We convinced her to go to our family doctor and, after a time, she was diagnosed with Charcot Marie Tooth Syndrome, a severe form of Motor Sensory Neuropathy.
Then the falls began…her hips would dislocate and her knees would twist as her muscles wasted at an alarming rate. Watching her suffer was unbearable!
At 20, she moved into a town-house with some friends. I was unsure as to how she would cope with a home with stairs, but, so far, she has only fallen on them three times, thank goodness!
Nita is 25 now and is still living independently, working part-time now and taking care of her pets whom she loves passionately. She has to consume 5 times the amount of protein a regular diet would contain to try and slow the muscle degeneration down. She faces life in a wheelchair very soon but does so with a quirky sense of humour that not only helps her to cope, it inspires me every time we talk.
And she has never lost hope.
Posted by angelicstains63, 28th August 2013