9/10/13 – Two years ago I first heard the word Duchenne – that changes my life, our life and has changed Ryo’s life too. I never thought there could be just one moment in life that changes everything – I always read, yes instances do happen and your life changes, I never believed..but indeed it did. Still the day remain fresh on my mind and probably it’s an unforgettable moment in anyones life.
Have walked two years with duchenne in our life and will be for rest of my life. Things have changed in these two years, from being in pain and being in denial – acceptance and fighting for it is the way forward we have chosen. We have hope!
Living each day and giving him whatever I can is the aim of our life. All occasions, all festivals. All birthdays are double the joy – celebrating the joy that he is in our life, celebrating the joy that he loves us, celebrating the joy that he loves celebrations, celebrating the joy that God has chosen us to be his parents.
Ryo loves festivals, he loves birthdays, he loves songs and dance. He just loves to be happy all the time – I believe all kids do but I love to see the spark in his eyes for all the occasions. He is as excited on anyone birthday as he would be on his own! I love him so very much.