Friday, August 01, 2008

Thanks to Jess Wilson for letting me borrow this entry from her blog. Look at this photo - have you ever seen such love in a child's eyes? Billy is very sick with a rare disease. Read please. More later on how we can pitch in to help.

My friend, Scott called me yesterday. Whoa! Don't just keep reading. Click on Scott's name and read the story. Please. Pretty please. This is important, folks. This MATTERS. You click. Read the whole article. I'll wait.

"I need help, Jess."

Sometimes, life is a game of triage.

What matters most? What needs my attention most urgently? Who might literally die if I don't take five minutes to get educated and HELP.

We fight for a better life for our children.

Scott and Katy are fighting for their child's life.

We fight for awareness. We walk and hand out buttons and magnets and scream from the rooftops and we watch hours and hours of footage about autism. 1 in 144.

How many people do you know who know what SMA stands for? Yet it KILLS MORE BABIES THAN ANY OTHER GENETIC DISEASE.

We have big names. Bob and Suzanne Wright - love em or hate em, they know people. They know a LOT of people. With money. A LOT of money. And Influence. Yup, a LOT of influence. Jenny McCarthy - love her or hate her, she is VISIBLE. She's on the cover of magazines. Mike Savage (I'm not giving you the choice on this one and I sure as hell ain't linking you to him) - hate him, he talked about autism because autism is VISIBLE.

SMA isn't sexy. It's heartbreaking. It's the stuff your worst nightmares are made of. It's the stuff that no one wants to talk about because we can't bear the pain of it. But Scott and Katy and so many parents like them live that pain every day.

We HAVE TO HELP. Children cannot die on our watch when they don't have to. No one should have to live this way.

We are hurting.

They are dying.


SMA has been chosen by the National Institute of Health to be a model for translational research because it is the closest to a treatment or cure out of 300 neurological disorders. Think about that. We are this close. This flippin close.

We are all connected. SMA genetic research in the "Genomic Modulation of Inherited Genetic Diseases" project may provide novel insights into potential ways to treat SMA and 40 plus similar diseases:

  • Tay-Sachs Sandhoff

  • Parkinsons

  • Alzheimers

  • Friedreich's Ataxia

  • Spinocerebellar Ataxia Type 1

  • Spinocerebellar Ataxia Type 2/Episodic Ataxia Type 2

  • Spinocerebellar Ataxia Type 6/Spinocerebellar Ataxia Type 7

  • Deafness/Dystonia

  • Myotonic Dystrophy

  • Duchenne Muscular Dystrophy

  • Late Infantile Metachromatic Leukodystrophy

  • Late Infantile Neuronal Ceroid Lipofuscinosis

  • X-Linked Adreno-Leukodystrophy

  • Menkes

  • Types A and B Niemann-Pick Disease

  • Fragile X

  • Machado-Joseph

  • GM2A

  • Gaucher Disease

  • Sialidosis and Galactosialidosis

  • Infantile and Late-Onset forms of Neuronal Ceroid Lipofuscinosis

  • Classic Late Infantile Neuronal Ceroid Lipofuscinosis

You see Fragile X in there, right? I knew you wouldn't miss that.

They need money. $1.3 million to be exact. They need to help fund incredibly promising gene therapy research.

If beautiful, delightful Billy were your child, you'd have called me too. You'd have called anyone and everyone you know who might be able to HELP. Please, pass this on to anyone who will read it.

It takes a village, friends. And the village that I want to be a part of, no the village that I KNOW I AM A PART OF, fights for its children. All of them.



Anonymous said...

thank you! thank you! thank you!

there's no weapon mightier than a mom with a heart and a blog ...

well, something like that ...

we WILL make a difference

Kim Rossi Stagliano said...

A heart, a blog, a gallon of coffee and a shitload of cash would help! :)

Anonymous said...

if i were queen of the world ..

Anonymous said...

Heartbreaking story. The dedication of Katy is amazing. And I thought *I* had it bad.

This mom literally has to suction out his mouth every few minutes so he doesn't choke. How does she sleep??

I couldn't even imagine being in a place where I *literally* had my child's life in my hands.

God Bless Scott and Katy and their brave, brave boy.


Maddy said...

I think we get off lightly.
Best wishes