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To better days and an end to the anguish

Happy New Year!!!!!
2015 was quite an eventful year so much so that I often caught myself unsure of when certain events had taken place. 
It was an amazing year 
The conversations around muscular dystrophy became recognised in Kenya and encouraged the entire MD family  to continue talking about what how they go about their lives. #YALI2015
 It was an adventurous year 
Thanks to the Mandela Washington fellowship, I met amazing people, fell in love with Swahili language for its beauty, got a chance to use a scooter and be fine with it, enjoy it actually thanks to the numerous wheelchair and scooter races on campus, dance without minding about seeming to have two left feet and enjoy moments in the sun after being holed up in a cold room like it's the best thing in the world. #YOLO
I discovered the beauty of not giving anxiety too much power over what you can and cannot do the art of not overthinking plans. A lovely bird always tells me that I have OCD that I shouldn't use around her. And she's right, the wisdom on her thanks to the age difference is slowly dawning on me. Anxiety in my world is that animal that can make me cancel on you in a huff if a detail doesn't fall in place, something a "huge" as a flight of stairs, unfamiliar terrain, accessibility of bathrooms, you name it, I guess my spoonies would associate with this. These four horsemen/women have taught me more lessons that past year than I would have ever imagined.
It was a sad year 
The year started off with a medical camp where there were medics who had more experience with MD and some of the families got to consult on individual cases. I got to meet Kimani, this charming young man who had a quiet smile, he didn't talk much. His eyes were searching and you could see that his was not an idle mind. When I met him, his parents were with him and they got a chance to talk to the doctors at length. There was a bit of waiting time so the two namesakes (Alex) got talking. I didn't meet Kimani again last year but was in communication from time to time with the dad. Sometime in September, one of the parents a dear friend calls me, she asked me if I was seated down, I was on my way home, I had just come from a picnic with some friends, told her I could talk. I could immediately sense something was not right. Kimani had gone to be with the Lord, a crisis is what they called it. Sudden loss. I switched off, I couldn't process it at that time. I got home and went straight to bed and cried myself to sleep. Duchenne had robbed us on this young man, his family was devastated. We need a cure and fast, we cannot keep losing such young people to muscular dystrophy. 
On the evening of 27th November, I see a number calling me several times, I was in a noisy place so picked up with a promise to talk to the caller once I got home. They assured me to call at whatever time as they needed someone to talk to since their boy had just been given a suspected diagnosis of MD. Again, I switched off, my gut told me that this wasn't one of those calls you forgot to return. Later on, the dad, devastated by the news he had been so unceremoniously given by a rheumatologist followed with a referral to a neurologist had sounded very much like a death sentence for their son who was barely 9yo. If I could I would wish away this beast called muscular dystrophy. 

All I pray for this year is strength to advance the discussion around MD and other rare diseases in Kenya. that families facing similar challenges may find each other as invaluable sources of support. That we are all relentless in our move towards inclusion. 

May this be a much better year.

Happy new year to the muscular dystrophy and rare diseases community in Kenya!!

 

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