Fighting For Gaucher Types 2 & 3 Children

Posted by Melissa | Filed under Research

I received this email the other day from Carrie Ostrea who’s 9-month old daughter Hannah is fighting Gaucher’s Disease Type 2 or 3. I’m really excited and amazed by what she is doing to help our children, and I really believe this is an important step in raising awareness and funds to find treatment and a cure. I’ve sent her Kyle’s information and picture to be included.

This is her message:

Hey,

I’m sending this message off the Gaucher’s mailing list, as this message is just for those of us with children who are still fighting against neuronopathic Gaucher’s Disease. Would you believe that there are thirteen families in this group?

I have been in talks with the National Gaucher Foundation, and they are enthusiastically joining our fight for our kids. They are creating an entire GD23 section within their organization for creating awareness, raising funds, and to help further research into finding our kids a treatment. The list that they have already offered in just a couple of conversation is just overwhelming, and I’m so excited about the fact that this is just the vehicle we need to help raise awareness and funds!

I’ll share much of it on the mailing list later this week, but one of the things they are going to do is to create a GD23 section in their quarterly newsletter. I am going to be in charge of this section. I want the GD1 community to not only know that GD23 exists, but how devastating THEIR disease is to families. Almost all people with GD1 think that is it — just some painful physical symptoms and lifelong treatment. They don’t have any clue as to what GD23 really are. They are our biggest audience, and the ones most willing to help us spread the word and help raise funds.

Within this section, I want to give updates on ALL of our children that are still fighting. I hope that all of you are willing to participate in this quarterly section. It is SO important that people reading this quarterly newsletter (which goes not only to the entire GD community but also physicians offices, related disease organizations, etc.) get to know our kids and want to fight for them with us.

Permalink | Comments (2) | May 2, 2009

2 Responses to “Fighting For Gaucher Types 2 & 3 Children”

  1. Patti Says:
    May 4th, 2009 at 9:13 am

    I would like to give my doctors office some fliers on Gaucher’s I live in a small town and i bet most of everyone has not heard of this before as i’m one of them people who have never heard of it before now.I think it’s important for people to know about this.Appointments seem to take forever my Doctor had made for me.To see if i’m a carrier like months ago.I need to know because this doesn’t stop with my grandson alone.If i’m a carrier all my children have to be tested to see if there carriers and before they are ready for kids they have to have there partner tested to make sure there both not carriers.If there both carriers they can’t have kids.The risk is just to high for the child to get gaucher and no parent wants to go through this.I have done so much reading when i found out my Grandson has this.
    Patti

  2. Children Fighting For Their Lives & Those We’ve Lost | Says:
    May 8th, 2009 at 2:58 pm

    [...] mentioned in a previous post, Carrie Ostrea is working with the National Gaucher Foundation to get our children listed in their [...]

Leave a Reply