Dear sis,

Today is World MSA Day.  This is a day which is celebrated world wide to raise awareness to the rare neurological disease that you have, called Multiple System Atrophy (MSA).  We are all to walk a mile and/or light a candle.

Well tonight sis,  I lit a candle and spent the evening thinking about you.   I wrote a post about you on the MSA Coalition page.  There are over 7,000 members.  It was so nice to connect with so many people whom are affected by this disease.    I wrote….

“In recognition of World MSA day, I would like to honour my sister.  I feel I need to bring hope to those who are informed that the prognosis is 7-9 years.  My sister is 53 years old and was diagnosed with MSA in her late 30’s.   She has been battling this disease for 15 years.  She is truly loved and cared for every single day.  She also has a family who loves and supports her.   We will never give up hope.  Today I am thinking of all the families whom are affected by this terrible disease.  Tonight at 8pm I will light my candle.  LOVE really is the answer.”

Tonight I sat and read the comments from so many people whom are all over the world.   From father’s to brother’s to husbands and wives.  Truly beautiful.

-I lit three cancels today, World MSA Day.  One for sufferers of the disease, One for their Carers, One for those who have gone before us.

-My Superhero who never had to wear a cape.  In loving memories my grandfather.

-For my dad, lost a year ago to MSA

-My MSA Angel.  Got her wings Oct 2nd.   She was a brilliant, beautiful young woman of 43 who never complained about her fate

Tonight I lit my candle and I played Dave Matthews song “sister’.   “I hear you laugh, my heart fills up, sister when you cry I feel your tears running down my face…..”.   I cried.

As I listened to this song, I had all sorts of wonderful memories come back to me.  They were so vivid. I felt myself laughing with you.  I could see your face so clearly.  I really really felt myself missing you.

It was so sweet when I dropped Jenna off at her dad’s earlier today.   I said, “Oh you should light a candle at 8pm in honour of Auntie Karen.” I knew she had dance but I thought I would mention.  I told her I was doing it.  She loves hearing about you.

When I texted her my pic of the candle I lit – around 9ish – she texted me back not one 1 but 2 candles.

Not only does my 13 year old little girl love you, she is learning all sorts of life lessons from you Karen.

I love you sis,

Kathy xo

ps.  Nite nite no PS story tonight.  I am exhausted as I have been responding to people on the MSA page.   There stories have been so touching.  I am emotionally drained !!!  I am taking a bath and going to bed.   Nite sis love you xo oh pics below are the one I put on MSA Coalition page.  The two candles at the bottom are the two Jenna texted to me.  Sooooooo cute xo love that girl !!!  She probably ran to get them but really who cares xo