HOPE for blog

Birthday Wishes

I truly understand what people mean when they say life is a gift.  Today I turned 43 years old, which is something many women would not want to publicize but I know firsthand that aging is a privilege.  My phone has been blowing up all day with birthday greetings and while I should be happy to have so many amazing people sending me their love, every “bloop bloop” text tone with another “birthday wish” is like a blow to my heart.  It’s hard to be in this day, living this milestone while Javier’s projected lifespan is less than half of the years I’ve already been afforded. 

So a few months ago I started a daily gratitude list.  Every day I log at least 5 things I am grateful for, which helps keep me from drowning in sadness over Duchenne.  When you have to come up with 5 things a day, they aren’t all profound – unless you think clean sheets on the bed is profound.  The top of my list is often the healthcare that Javier is fortunate to be able to afford access to.  Imagine if we could add that to the gratitude list of every parent of a boy with Duchenne?

I have a birthday wish.  It’s a big one.  I wish that every boy with Duchenne had access to multidisciplinary care.  It’s been proven to add 10 years to DMD boys’ life expectancy.  And if I got that wish and ALL boys had the chance to live up to 10 years more…  Well, give me five more minutes with Javier and I will find a way to buy 5 more.  That’s it.  It’s that simple.  Science is moving fast – so fast that ten years is the difference between being here when a cure is discovered – or not.

To all those who support our efforts, from simply being aware to funding our projects, thank you!  You are all on my gratitude list – this and every day.

4 Responses

  1. Michael Voto
    Mar 06, 2015 - 04:26 PM

    met your family at ppmd bless all of you,,better bright futures are commimg our way we will win the fight yes we will !!!!

    Reply
    • admin
      Jul 07, 2015 - 10:50 AM

      thank you for reaching out! hope is definitely on the horizon!

      Reply
  2. NASRI ALI
    Apr 26, 2015 - 08:13 AM

    Bonjour
    je un enfants Qui port la Mem Maladies Duchenne j ai besoin de traitment Qui serre Faillible Pour cette Maladies .

    Reply
    • admin
      Jul 07, 2015 - 10:57 AM

      I am so sorry to hear of your son! Hope is quickly becoming a reality for our boys – it’s on the horizon!

      Reply

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