This story fist appeared in the Information Point newsletter Our World in 2010.
On November 5th 2004 x-linked myotubular myopathy took the life of my eight-year old, younger brother Patrick. Those who have lost a loved one know that this kind of broken heart does not mend, but over time the memories of their life can sometimes lesson the amount of time, that the grief consumes you.
I was two weeks away from my tenth birthday when my brother died. I am now sixteen and as I write this the first memory that comes to mind of Patrick is of him passing away in my mothers arms, as I held his hand. It’s ok because those tears are drying quickly and a smile is coming to my face wOn November 5th 2004 x-linked myotubular myopathy took the life of my eight-year old, younger brother Patrick. Those who have lost a loved one know that this kind of broken heart does not mend, but over time the memories of their life can sometimes lesson the amount of time, that the grief consumes you.ith memories of Patrick pulling my hair as I walked away from his bed, him peeing on me as I helped my father change his diaper, lying in bed with him watching every ‘Land Before Time’ movie, thinking of the looks we got in hotel pools as he was still attached to his ventilator, and of how he smiled and caressed my arm so lovingly as he greeted me. Still even more so I remember the battles he fought along side my family to live his life and the bravery he showed right to the very end remains an inspiration to me always.
My brother’s memories are kept alive in so many ways in my home, through extended family and friends, and even in our community with funds raised in his memory that contributed to other special needs children. Photos are in many places in our home, stories are often told, and even my two-year old sister Sophie has come to know about her older brothers life. Connections with other MTM / CNM siblings and attending the last MTM / CNM Family conference has helped to ease my grief, but music and song allows me to dream.
After Patrick’s death I began singing and music has continued to be a way for me to deal with the emotions around his loss, that at times have been overwhelming. Since then I have performed on a number of occasions at community talent shows, in a high school musical, and even at fundraisers that have contributed to the fight against MTM and CNM. Music is not just my therapy, it has become my passion and I am sure Patrick has been instrumental in that. Over the last year or two I have written lyrics and in fact this past summer I wrote the lyrics and music to my first complete song, ‘I Need You’, in memory to my brother. In weeks to come I will be performing at holiday festivals and a few days ago I posted a video of me singing ‘I Need You’, live from my bedroom. Sorry for the poor quality. I am dedicating this song to my brother and to all of those who have been taken from us by MTM and CNM, and to those who are still fighting to survive, along with their families. I hope you like it.