So in yesterday’s article you saw how miserable most of May was.
However my neurologist called me at the end of April with my genetic blood tests results. We thought I had SCA3 but lo and behold it was SCA2. The interesting thing about SCA2 is that it responds to a drug created for ALS, Riluzol. It was tested on some spinocerebellar ataxia type 2 patients and it showed improvement after a few months to a year. I started taking it a few days ago because last month I had to take iron supplements. Cross our fingers it works. (It is very strong medication and can affect your liver so that needs monitoring.)
People want God to heal them when they are asleep as an electric healing jolt from heaven strikes them, but I see God working with the ataxia too. Like out of all the ataxias, I had to have SCA2 and Riluzol was even created for a different disease altogether.
Additionally in early April, my friends who attended my former high school, specifically class of 93, wanted me to get in touch with them because they were distressed by my diagnosis.
So I established communication and asked them to visit my relatives who were lonely and isolated because the society believes a witch cast a spell on my paternal family and birthed the ataxia. The same society probably thinks ataxia is contagious beause my relatives have been shunned like they have ebola.
There are three afflicted families in Nairobi. The first family resides in Rongai and their mother, Mercy and 2 kids have ataxia. My friend Winnie established a relationship with Mercy and her husband and visited them twice before the girls went as a larger group.
My friends also raised funds within the group that will be distributed among the three families. So on 27th May the leader of the group Rosemary Ndungu, accompanied by Winnie Kimani, Christine Mwea, Christine Kinyua and Irene Muriuki went to visit the family, ate food together, bought Mercy a walker she really needed and gave the family Kenya Shillings 10000.
My friends are the first responders to this accident scene. I would have done nothing without their backing.
Because of them, I have to pick this baton and run with it. No matter what circumstances I go through.
The reason I say that, is because May had shaken my foundation. I have also been exposed to a lot of negativity. I have good intentions for my family but can only help with the support of everyone. So I was feeling bla about everything.
Promoting the gofundme page etc. I have never had to do this before. Ask people for money. It is not a pleasant experience.
But on Saturday, my cousin (I remember her as very tall and pretty; she lived with my family when I was about 10) broke into a smile when she tried her walker for the first time. Her whole family was in tears most of the visit.
That smile changes everything. All the stuff I have been exposed to is worth it if it made Mercy smile.
I am in contact with Mercy’s husband on WhatsApp. He is so happy. The burden of supporting his wife who has ataxia, plus his two children who are starting to show symptoms, his brother and sister in law with ataxia, has left him so thin and looking 20 years older than he is. The stress is visible on his face and small frame.
Ataxia also affects your ability to work and with Mercy not working, the family is financially crippled.
They need a lot. First I was informed Mercy stays home alone all day unattended. She can easily fall down and break something. Next they don’t go for physiotherapy. It is too expensive.
The list goes on and on.
But I have to change their lives.
I’m not employed anyway; I can commit myself to this. If I don’t fight for them who will? If I don’t grovel and put aside my pride and beg for money who will? You have to understand this is not in my nature at all. I am very proud. I’d rather drink water than ask someone to buy me food.
I’m taking on this project whole heartedly. I know it will not be easy. I know some of you will observe from a distance and only join to help a year down the road. But your help is welcome even if it is one year down the line.
Any great endeavor needs a visionary leader who trudges on despite all circumstances. Who sees the vision they want at the end of the road.
Then five years down the road you will all be cheering me and calling me amazing. Humans are so funny. LOL
I must however commend this group of ladies who contacted me via Rita Nyambura in early April. Most groups have a lot of drama and pettiness that I avoid like the plague. This group has a group of level headed, kind individuals. They help and support each other. Like the time Winnie had a personal problem with a child. They went to visit her.
You must be commended for focusing on the bigger picture and offering this kind of support to your members.
And to a family that was downcast, hopeless and sad.
These girls are the catalyst for this whole thing. Their initial interest has given me the confidence to continue helping my family and are responsible for whatever will happen this year. They lit the first match that started a big fire. I am eternally grateful and can’t wait to be in Kenya to thank them personally.
And visit Baba Mwaniki who is my latest buddy. He thinks I am 18. “Are you sure of your age?” he asks. And is on my back for being single. “You are just fussy coz you are pretty.”
Fussy. Guilty as charged.
Special thanks to Lydia Ngubia who has become a wonderful, funny friend and has been to visit my aunt Nyambura. My aunt is buzzing with excitement.