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Archive for the ‘Gaucher Disease’ Category

Changes after just 5 days?

Posted by Melissa | Filed under Gaucher Disease, Thoughts From Mom, Treatment

It’s been a crazy week around here, so I haven’t had a chance to update in a few days…
I can’t believe that Tuesday Kyle goes in for his second round of treatment, already. The time flew by, and I’m glad for that. I truly believe that his first session has already caused changes in his [...]

Will We Ever Get One Without The Other?

Posted by Melissa | Filed under Gaucher Disease, Thoughts From Mom, Treatment

I swear that since Kyle’s medical issues began last October, there has never been a good thing without a bad.
As mentioned earlier today, Kyle received his first Cerezyme treatment yesterday and it was such a good thing. I am so happy that he is finally getting the medication his body so desperately needs to begin [...]

First Enzyme Replacement Therapy Treatment

Posted by Melissa | Filed under Appointments, Gaucher Disease, Treatment

Yesterday was Kyle’s first treatment, and it went amazingly well. He took it all like a pro.
He had a bottle of formula after getting his blood work and IV line ready to go, then he fell asleep in his stroller. I left him with the nurse to go and get a coffee, and when I got [...]

So heartbreaking…

Posted by Melissa | Filed under Gaucher Disease

I just finished reading a guest blog post on Carrie Ostrea’s blog about 23-month old Ethan, and my heart broke for that sweet little soul. He has just been diagnosed with Type 2 Gaucher since they originally thought it was Type 3.
He’s 23-months old…1 month shy of his second birthday, and most kids with Type [...]

Children Fighting For Their Lives & Those We’ve Lost

Posted by Melissa | Filed under Gaucher Disease

As mentioned in a previous post, Carrie Ostrea is working with the National Gaucher Foundation to get our children listed in their newsletter in an effort to raise awareness, and hopefully get things moving more quickly on finding treatment and a cure for children with Types 2 & 3.
So far, these are the precious children who are fighting [...]

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