We are approaching the 3 year anniversary of Jahan’s diagnosis. It seems like yesterday that I brought my healthy baby boy home from the hospital, filled with hope and aspirations for his future. It now breaks my heart realizing how many challenges and battles he may have to face. He is a fighter, and I know he will always fight, but why does he have to?
While I live in this “honeymoon phase” of my son’s relatively good health, I’m constantly aware that his muscles get tired and painful, his legs may give out on him causing trips and falls, or anyday his heart may give out. The likelihood of dying young stands in stark contrast to my son’s lust for life and adventure. Dying happens to us all, there’s no denying that. But within that simple truth comes the realization that it shouldn’t be the result of this horribly unfair disease. It should not be due to his lungs failing, or from his heart giving out as a young man. It should be long after me dancing with him at his wedding, being a grandmother to his children, and him meeting his own grandchildren. It should be after him living a long, happy life. That is the wish I have for Jahan. I wish him a life where he can choose independence from his parents, where his body doesn’t give out on him from a lack of vitality, but instead from many, many years of a long and happy life.
As my son grows, it breaks my heart to know how many difficulties he may face… to using the washroom, to having to turn while in bed, to sitting in an airplane seat for travel. He loves to travel and I know he will have so many dreams to visit different places. I agonize over the day when he is not as mobile as he is now, causing even greater challenges for him.
Ironically, on the third anniversary of Jahan’s diagnosis, June 4, (a day that is burned in my heart forever), the Peel Regional Walk in Brampton for MD will be taking place at Chinguacousy Park. Please help me bring awareness to this event. Support Jahan by coming out, spreading the word, or giving any donation, big or small to help with this cause. It may sound silly, but I feel that participating in this will directly impact all the positive changes that will come Jahan’s way.
We need hope – hope for Jahan that a safe and effective drug for Duchenne is found, one that can benefit all the victims of this terrible disease.
The Duchenne community is facing the most monumental decision in the history of this disease. On Friday January 22, 2016, the US FDA will decide whether or not to approve the drug Eteplirsen – the first safe and effective treatment for Duchenne Muscular Dystrophy. We pray that this treatment is approved to give Jahan and every boy with Duchenne the chance to have a fulfilled and healthy life. January 22nd is also my mother’s birthday and I don’t believe this is a coincidence. My mother is a symbol of strength, hope, and love, something I strive to be for my children. I know that this day will bring us hope for Jahan as well – hope that Eteplirsen is approved by the FDA and that an effective treatment can finally be provided to my son. He deserves no less.
My hope and prayer is to see huge strides in treatment, or even a cure within Jahan’s lifetime. Every little bit helps us get one step closer. I have to believe this – this is what keeps me going.