Finding Treatment and/or A Cure

Posted by Melissa | Filed under Gaucher Disease, Research

It’s a reality that very few people are looking for a treatment or cure for Gaucher disease types 2 and 3. The few that are, can’t really do much because of the lack of funding. And that means that children are going to keep dying from this disease – mine included.

Which is why myself and a few other moms are determined to find something to save our children. We’re working to raise money to pay a research team to work specifically on GD 2/3, and with the help of various Gaucher organizations, we’re going to do just that.

I think of all the children with Gaucher Disease Type 2 and 3 as the “forgotten children”, because they don’t even have a fighting chance. Unlike cancer where they have things that can be used to beat the disease, there is nothing to give the kids with GD 2/3 a fighting chance to beat and survive this disease. Nothing…

And to think that we were so relieved when they told us that Kyle didn’t have cancer last October when he was hospitalized for testing. If I we only knew…

Now as awful as it is for any child to have to suffer through cancer and I don’t wish it on any precious child; an article from the American Cancer Society states that childhood cancers are mostly treatable. In fact, according to a study, 97% of patients achieve complete remission.

So is it any wonder that I wish Kyle’s diagnosis had of been cancer, that he had of been given a 97% survival rate? And because he would have been diagnosed at 3 1/2 months old, they would have caught it so, so early. I mean, by now his treatment could have been done and over with, he could be in remission and living a normal life. 

Instead, he was diagnosed with Gaucher Disease Type 3 with a 0% survival rate.

But imagine if the same funding and research that goes into Cancer, went into rare diseases like GD 2/3. And it’s not only this disease that would benefit from research, but so many other diseases that effect the brain – like Parkinsons, which is linked to GD 2/3 and has so many similar symptoms.

Back to putting together a research team…I’ve already started organizing an online fundraiser to raise money for research, and I’ve been blown away by the response. It’s really starting to snowball as people I know and work with online jump onboard, and tell others.

Which means, I’m formally registering my charity ”Neuronopathic Gaucher Foundation” and 100% of money raised and donated with go directly to research. That way people who donate can claim it on income tax, and the charity won’t have to pay taxes on the money raised.

Carrie Ostrea is working directly with the National Gaucher Foundation in the US to get a formalized research plan and structure together. The concept is to attempt to create an umbrella with all the Gaucher organizations and other related diseases, and get them to work together and create a common point where all the research information is kept updated, and work on finding research that could make a difference for the kids who are here today, still fighting. 

And I’ve been talking to the president at the National Gaucher Foundation of Canada with hopes of getting their help, and I also have an upcoming meeting with a PR gal to work on spreading the word and getting the attention of the media.

I can’t just sit back  and let my sweet little boy die without a fight. No one is going to step up to the plate, and save all these kids who’ve been forgotten because their disease doesn’t effect hundreds of thousands. Does that make it right – to just let all these children die because there aren’t enough of them?

I mean come on, we’re in the 21st century for goodness sakes. They can do open heart surgery on a fetus still inside the mother’s womb, but we can’t find a treatment to kill off the Gaucher cells that live in brains of these children, stealing their lives? If only they could just inject the enzyme replacement therapy directly into their brain…

Permalink | Comments (4) | May 29, 2009

4 Responses to “Finding Treatment and/or A Cure”

  1. Carrie Says:
    May 29th, 2009 at 12:42 pm

    You know I am right there with you…

    Carrie’s last blog post..Denial? Reality? What do I say to strangers?

  2. Michell McKellar Says:
    May 29th, 2009 at 2:27 pm

    Melissa, you know if there’s anything you want me to do…I’ll do it, just let me know.

  3. Patti Says:
    May 31st, 2009 at 5:48 pm

    Your 100% right.That just make me think about Jerry Lewis and all the money he raised for kids it’s to bad we can put Gaucher Disease in front of the world to let everyone know this is out there and can strike anyone’s child.They give everyone condoms and tell everyone in the world what there use is for.So why can’t we tell the world before they have children to be tested for Gaucher Disease….before another child has to die.
    Mom

  4. Patti Says:
    May 31st, 2009 at 5:50 pm

    Your 100% right.That just made me think about Jerry Lewis and all the money he raised for kids it’s to bad we can’t put Gaucher Disease in front of the world to let everyone know this is out there and can strike anyone’s child.They give everyone condoms and tell everyone in the world what there use is for.So why can’t we tell the world before they have children to be tested for Gaucher Disease….before another child has to die.
    Mom

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