Time passing by..

Watching my boy Grow up and get bigger is a joy but at the same time I fear for the future, Kye will be 2 years old this month and the time has just flown by, we are off to the doctors soon to get our referral to the DMD clinic in Sydney, this is a big step for us and I find myself sometimes wondering is it the right thing, maybe they got the test wrong and he won’t need this appointment, but deep down that voice of reason says yes Louise you need to make this appointment for the greater good!

I feel blessed every single day I spend with my children all of them are just as amazing and special to me and I can’t even face the thought of every being without any of my kids, I just hope I get to see Kye grow into Adulthood like his brothers and sisters, I have hope always of a cure, but with each passing day more children and their families are faced with the reality of the fate of a child with DMD, I don’t focus on the negative but at times it’s hard to keep it all together, just this week another 2 warriors have passed on, and 12 months ago today Mitchell Jones passed away aged only 10, ten years old, my daughter Chloe is 11 and I can’t even imagine what his parents, Natalie & Christopher and his siblings are going through, how hard it must be to lose a child at such a tender age, at any age. I remember the heartache I felt at losing my young brother at 26, I am so happy for the time we had with Paul but I would have loved so much more time, it’s makes me angry and I often ask why did my family have to deal with DMD like so many families do, I wish we could cure this terrible disease today, right now, right this minute because it’s unfair and I hate DMD with a Passion, I hate that any families have to suffer the lose of a child through such a heartbreaking and debilitating disease that sadly most people have never even heard of.

I know I am sounding rather down and depressed at the moment and I apologise for that, it’s just so damned hard sometimes, Kye is only little and we are yet to deal with the affects that DMD will ultimately have on his body, as a mother it is just so saddening to think of the things he will not be able to do or achieve in his life, I am determined that Kye will have a fantastic life and strive for his dreams, I am determined to fill his life full of wonderful amazing memories of being surrounded by love and happiness, I will never let him see DMD get me down or be our focus, our focus will be on Kye living an amazing life that will leave us with so many beautiful memories to cherish and re-live.

I wish I could do more, say more, but all I can do is hope and pray that a cure is soon found and that no other families will have to lose their loved ones to DMD.

Kye is such a loving, happy little man who we all just adore, he brings us such joy and happiness, every day I smile when I see his cheeky face, we are blessed as a family to have such a wonderful little boy in our lives.

I will sign off now with a small message to Natalie & Christopher Jones,

Sending you both all our love and big hugs, 12 months seem to have flown by but for you and your family I know it will not have felt like this, each day was a day to miss your little boy more and more, I know you have so many happy and wonderful Memories of your precious Mitchell, he was lucky to have such a supportive and loving family surrounding him, I know you will all be together again one day and that his love will surround you always. Thinking of you all and praying for a cure, Thank you for sharing your journey with us all