A Message from A Duchenne's mother...

Dear Son,

 

YOU were a miracle when you came into our lives — an unexpected surprise, a blessing from God, a heart filled with joy and exuberance sent to us to fill our days with laughter and our spirits with light. You are your brother’s loyal companion, your father’s star, and your mother’s beating heart. Everywhere you have tread in your four beautiful years on earth, these places we call home. You have brought warmth to hearts with your impish charms, and mesmerized all around you with your naughty grins… Today you are four. The year that has passed has been dark, an unanticipated horror I would wish on no parent. Words fail me, emotions threaten to drown the moment in their callous onslaught — I am overtaken and overwhelmed beyond expression. Like a demon from the dark, this disease has choked us in our stride — pausing for full effect, slicing through my entire being like a thousand knives. It has broken me, yet I push on. It has crushed our hopes and dreams, and yet we walk on. Onwards and beyond, marching blindly, carelessly, frantically towards any possible cure, a glimmer of hope, anything, any little thing, any idea, any miracle that may allow us to let you live, let you breathe, let you be. I love you beyond measure — I would lay down my life for you. It sounds like a silly cliché, but if there was a way for me to hug this disease away, take it upon myself to relieve you from its threat — if there was a way to save you, nothing would stop me. This birthday, one which should be fi lled with helium balloons in rainbow colors, and Thomas-themed cakes, return presents and screaming kids in bouncy castles — this birthday is instead a bittersweet reminder of the clock ticking; frantic internet searches for medical terms we never knew existed, and potential cures that are literally light years away. I can no longer bring myself to continue to read articles on diseases a little boy should never have to face, yet I am hungry, ravenous even, unable to contain myself as I seek that which I know doesn’t exist yet — a cure for Duchenne. I was always the disciplinarian — a gentle giant — your mother with the billowing laughter and stern looks insisting on you and Hamoudi “cleaning up” after yourselves. Now I am insisting on other things — for you to jump one day as you should at four; for you to run with your classmates and not hear your pleas for not wanting your friends be faster than you. It is a cross I wish no one should have to bear — the pain of giving you cortisone each weekend, knowing it will slow your growth, and deter this menacing monster … Nothing has meaning anymore except this. No earthly news shatters me anymore. Nothing and no one is grander or more meaningful than this — a race against time, a plea to buy time, anything for the moment I am told — yes, miracles do exist. Yes — your son is cured. I want to shield and protect you. I want you to stay three, and fi ll my days with your naughty laughter. I want you to dream big dreams and believe in angels. Most of all, I want you to know hope. I am sorry, my Bazi, my heart, my son — I am sorry I could not protect you from this most dangerous of diseases, the most stealthy warrior on this battlefi eld of life. It might have attacked us from behind, but we are faced with it now. And I will fi ght. I will fi ght with you, and fi ght for you, and most of all I will fi ght till my dying day to stop it in its tracks — to get the attention it deserves, so that no other mother has to write a letter such as this to her son on his fourth birthday. I love you. Rasha Abdullah Alnaibari @kuwaitmusculardystrophy ❑ ❑ ❑ 

*Duchenne Muscular Dystrophy (DMD) is a fatal genetic disorder diagnosed in male children. It is characterized by progressive severe muscle degeneration and weakness until it reaches the heart and lungs. Boys are typically in wheelchairs by the age of 12 and die in early adulthood. To read more: www.parentprojectmd.org*