You are one of the hardest months of the year for me. You see, It’s Rett Syndrome awareness month and whilst I want to scream and shout everything I can about the devestatsting condition, I struggle. You see, Rett Syndrome broke my heart, it is the thief in the night. It came and it stole my daughter from me.
In November it will be ten years since I lost Livvy, yet my heart still feels as if it was yesterday.
The pain is raw, the pain is open and the pain is incredible.
Yet it has been 10 years and in that ten years there had been hope.
Hope for treatment
Hope for a cure.
Hope that tomorrow no more children with be born to suffer from Rett Syndrome .
Hope that tomorrow no more will lose their battle to Rett Syndrome
Hope that no more parents will cry themselves to sleep broken hearted.
Hope for No more empty arms.
So October whilst you may tear at my heart, I’m coming at you fighting. Together you, I and your 31 days are going to shout loud.
We are going to fight back and say, “No more Rett Syndrome”, no more broken hearts, no more shattered dreams and no more empty arms.
So come on lets do this, lets make this campaign matter. Let’s start sharing our photos with our loved ones in our arms reminding everyone to make the moments matter but also sharing awareness of the condition that has left my arms empty.
Share your photos with two hashtags
Let’s get people googling Rett Syndrome.
Let’s get people learning:
QUICK FACTS ABOUT RETT SYNDROME
- A debilitating neurological disorder
- Predominantly affects females but also affects some boys
- As prevalent as Cystic Fibrosis, ALS and Huntington’s
- Babies lose acquired skills between 1 and 3 years old
- Caused by a single gene mutation that leads to underproduction of an important brain protein
- Most kids with Rett cannot speak, walk or use their hands
- Another child is born with Rett Syndrome every 90 minutes
- Potentially REVERSIBLE through reintroduction of the underproduced protein
- Girls with Rett function mentally at a much higher level than previously thought
Let’s raise awareness and lets make this October count.
Please share your photo’s,
Do it, for those fighting this syndrome every day.
Do it, for the loved ones whose heart breaks watching Rett Syndrome slowly steal their children away.
Do it, for the scientists who are working so hard to one day cure this evil, help get them the funding they need for research.
Do it for me, help me make sure that one day no other parent has to face the pain of losing their child to this syndrome.
Do it for Livvy, ten years may have passed but lets keep her memory strong. Lets hold her light and shine it brightly.
Let’s do this.
Let’s flood social media with the hashtags #Nomoreemptyarms #rettsyndrome
Lets get them noticed, lets shout loud.
Share one photo, share a hundred.
Share a memory, make a memory but lets make this October matter.
October we can do this.