ANOTHER LIFE LOST TO DUCHENNE!
ANOTHER CHILD LOST TO DUCHENNE…..
We all see these posts, more often than we would like. I have been asked on many occasions why do we all share these posts? Especially knowing that one day that candle or photo shared will be for our own child.
Many of us on Facebook who part of the Duchenne community have never met in person. Many of us live thousands of miles apart and will probably never meet. One thing that has bought us together and that is Duchenne. When we hear of the children in our community passing away, it affects us all very deeply. We may not have met that child face to face, however we know that child, we know his parents, siblings etc from the stories shared about their triumphs & tribulations, the heartbreaks & setbacks. The celebrations & good times. We watch these children grow through the photos shared by their families, we get to see their amazing strength & courage as they live their lives under some shitty circumstances.
It’s like losing a part of our family… our heartbreaks for the families left behind to pick up the pieces, and at the same time our heartbreaks a little more for our own children…knowing this is the only outcome for Duchenne until a cure is found.
I was so saddened to see the news that Lynn & Kenny Arsenault had lost their precious boy Daniel aged 18 just few days ago. I have been friends with Lynn for over 3 years on Facebook, I have gotten to know Lynn and her family through social media, through all the beautiful photos and posts shared by Lynn. Daniels Smile is the most beautiful in the whole universe, big happy smile that would brighten the darkest day if it happened to pop up in your newsfeed. He always looked so happy! Daniels smile is something that I will remember forever and feel so glad I got to watch his life journey over the last 3 plus years. My love and thoughts are with Lynn, Kenny, Rebecca & Tommy and their extended family at this heartbreaking, life shattering time. Rest Easy beautiful warrior Daniel, say hi to my brother Paul for me!
We become family, who understand the daily struggles of Duchenne, we get to watch these kids grow, and we get to see the amazing strength and courage that these true heroes have, they inspire us to be better people, we laugh and cry with them. We get to see first hand the love that is showered over them, the bond mothers and sons, father’s and daughters (and vice versa) The bond of siblings & grandparents & grandchildren. We witness the sheer determination of families ensuring these kids live every moment to the fullest. Many people hate social media, I don’t! it has enabled me to make some amazing friends, and to be a part of this Duchenne Family whose support has helped so many of us get through this tough battle.
We share their candles with the message of Another Child lost to Duchenne to get the awareness out there of how desperate we are for that cure! We hope each candle shared will be the last! We share these posts not only for awareness, but out of respect to let grieving families know we are thinking of them.
I am glad to see these memorials , honouring the amazing warriors that leave our world, warriors who touched the world and made it a better place, they touched our hearts and the hearts of so many people. (although it would be good if we didn't have to share these candles anymore)
.I am thankful to know you all, and to watch your family’s journey. Thank you for sharing your lives with me, I feel blessed to know you all!
