Caring for Carl Campaign
- By: Stefan van Tonder
- Short URL: https://www.backabuddy.co.za/caring-for-carl-campaign
Hi, my name is Carl, age 14, and I have been diagnosed with a degenerative condition called CMT or Charcot Marie Tooth Type 2A1.
Sounds impressive? Believe me, it's not. My nervous system is on strike - and it seems this is for the long haul. No messages to my legs and arms! This has been my life for 10 years, and my body is getting weaker every year.
So, instead of seeing a movie, or J-Boarding, I am seeing the neurologists at Tygerberg Hospital in Cape Town, and they suggested that we start to re-test. This will include nerve conducting tests and a full panel genetic screening. Can't wait for the nerve conducting!
I struggle to walk and have to use a wheelchair most of the time. In my house I have the bronze, silver and gold medal for falling! I need surgery to correct my feet in order to be able to wear shoes -my dream! I struggle to use my hands for everyday tasks like getting dressed, holding a cup or eating. I just pretend to be royalty, and that being served by my family is 'normal.'
Doing schoolwork is a long and difficult task. It will be awesome to have a touch screen. My writing font has yet to be patented. My pain is constant, and my meds is changed on a regular basis.
I do have a wishlist - I want all those cool gadgets, but for now - I need more independence.
Please consider me.