#WhenIGrowUp I want to be…

Posted Wednesday June 10, 2015 by Melissa

#WhenIGrowUp I want to be…

Guest post by Geraldine Renton, mom to Ethan (affected by Hunter Syndrome) from GeraldineRenton.com:


Project Alive

What is Project Alive? In the simplest of terms…it’s a chance for boys living with Hunter Syndrome to stay ALIVE. Watch and then finish reading…

What is Hunter Syndrome?

It’s a rare genetic condition that slowly kills these boys day by day… month by month… year by year…. Every milestone these boys reach, Hunter Syndrome demolishes throughout the years.

Hunter Syndrome knows no kindness. It will show you what your boys are capable of…it will give you a glimmer of hope…then it will snatch it away…leaving your boy trapped in a body that does not work and with a mind that cannot comprehend even the simplest of tasks…

Just before Hunter Syndrome finishes with your son…it will erase even his beautiful smile….

How do I know all this?

Google did not tell me this.

Sadly…experience has taught me this.

I have watched my first born, my beautiful…smart…funny Ethan, forget the names of his family members. I have watched him forget what a cup is. I am watching him struggle with feeding…his words…his breathing… his walking…all because there is not enough money to fund vital research into Hunter Syndrome…


I am not asking for your sympathy. I am asking for your help.

Ethan is one of 2000 boys (2 girls) fighting Hunter Syndrome… fighting to stay alive.

Only 2000; I’ll grant you, it’s not many.


BUT these boys are also

2000 sons

2000 brothers

2000 nephews

2000 grandsons

2000 friends

2000 neighbours

…a ripple effect…Hunter Syndrome does not just affect 2000 boys.

There are no words that I can use to describe the pain of watching your son slowly die before your very eyes… nothing I can type here can help you understand that…

Project Alive is the brainchild of a wonderful mom, who sadly walks with me and the other 1,998 families worldwide as we face Hunter Syndrome.

But there is hope. There is always hope.

Gene therapy may just pave the way to an actual cure… We are on the verge of it…really.

We need your help more than ever.

Please go to ProjectAlive.org to watch a compelling video that will give you a moment’s glimpse into our boys’ lives.

Take pictures of your beautiful children, telling us what they would like to be when they grow up! And don’t forget to take one of yourself… a great excuse for a selfie! You can upload them onto ProjectAlive.org, Facebook, Twitter, Instagram, and as many social networking sites as you like using #WhenIGrowUp.

But please, please remember to donate $1 for every healthy child in your life HERE or using the GIVE NOW button on ProjectAlive.org.

No parent should have to watch their child die.

Ethan just wants to be ALIVE—please donate.

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