In the past month, I have been contacted by three families of children who have recently been diagnosed with Gaucher’s Disease type 2, the fast progressive form. It breaks my heart that there are more babies even a bit younger than Hannah is now going through this hellish disease.
There is one family that I have come to know over the past few months who has a son just under 2 years old. He is just a gorgeous little boy! Unfortunately, they had recently retyped his classification from type 3 to type 2 due to an updated DNA sequencing, I understand. After talking to his dad, I was friggin’ PISSED OFF that this was possible! Type 2 only has a life expectancy of “up to” 2 years old! This baby boy was already almost there. I spent that entire afternoon angry and doing whatever I could to find information on researching or just anything.
There is so little out there research wise for our kids. It sucks. There has to be a way to change this. I will FIND a way to change this.
We still don’t know if Hannah has type 2 or type 3. Last we were told by Dr. Schiffmann, Hannah’s neuro, that it looked like it could be a “slow type 2” or a “severe type 3.” She is the “unknown” Gaucher’s baby.
Please keep these families in your thoughts and prayers.
I can understand your frustration and helplessness.
When my baby died I was so sad, but when the babies of a niece and a good friend died too, I got so angry.
I felt so helpless they had to go through the same pain and I could do nothing to make it easier.
Even worse, we didn’t know why the babies died, so we could do nothing at all to prevent future problems.
laane’s last blog post..Some good news about my autistic son
Wow. Unbelievable.
Hang in there!
Have a great weekend!
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Unbelievable! My heart just breaks for all the families affected by this terrible disease.
I don’t know if I mentioned this before but I used to run a DNA Sequencing Core facility for the local university here in Wyoming before I lost my position due to it moving from one department to another… But I agree there just isn’t enough funding for science in general especially funding for rare diseases!!
Oh and I finally got you added to the blogroll over at the new From Huskies to Husbands site at http://fromhuskiestohusbands.blogspot.com
That is so sad! My heart goes out to you and these other families. I can understand your anger.
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