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Archive for the ‘Gaucher Disease’ Category

I Feel So Hopeful & Blessed

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

When I hear of the heart-breaking things that other parents of children with Gaucher disease are dealing with, I have to count my blessings.
Kyle has never had, and still doesn’t have any major issues. He is improving in both his gross and fine motor skills. Things he couldn’t do in one therapy session, he is [...]

Do I Dare Hope?

Posted by Melissa | Filed under Gaucher Disease, Research

Article Reprinted from: http://blog.taragana.com/health/2009/09/22/new-method-to-turn-blood-brain-barrier-into-therapy-delivery-system-12334
LONDON – Researchers at University of Iowa have discovered a way to turn the blood brain barrier into a production and delivery system for getting therapeutic molecules directly into brain cells.
Working with animal models of a group of fatal neurological disorders called lysosomal storage diseases, the researchers found that these diseases cause [...]

Another one lost to Gaucher Disease :-(

Posted by Melissa | Filed under Gaucher Disease

This little boy was just 10 when he passed away, so I’m assuming he was a type 3 like Kyle. You can read his story here: http://bit.ly/rg3Cu

There Are Too Many Unknowns…

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

Yes, they have a cord blood match for Kyle. But are we going to do the transplant? Well, in my quest to learn as much as possible before making a life and death decision regarding Kyle, I have to say that as of right now – my answer is no. Here’s why:
I contacted 4 of [...]

Good News, Info To Chew On, Update, And Something Strange

Posted by Melissa | Filed under Gaucher Disease, Treatment

While Kyle was receiving a treatment today, I received good news today concerning the expected shortage of his treatments come August…Kyle will NOT have to miss any of his treatments.
They said priorities are in place, and that I don’t have to worry about Kyle’s treatments. In fact, they have appointments booked right up until September for him. [...]

Bone Marrow Transplant Hanging Over Our Heads

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

The whole bone marrow process is out of our hands. It’s up to the doctors to make things happen.
But that doesn’t really stop people from asking us about what’s going on with the whole thing. And to be completely honest, ever since we found out our other son was not a match for Kyle, we’ve [...]

Tags: Gaucher Disease, gaucher disease treatment, gaucher disease type 3, gaucher treatment

Oops, forgot to mention…

Posted by Melissa | Filed under Gaucher Disease, Treatment

Yesterday when I posted about Genzyme halting production on the medication that Kyle takes to treat the physical symptoms of his disease, I forgot to mention why…
They reason they have to halt production is because the plant in Boston has to be decontaminated due to a virus, so there really isn’t anything anyone can do [...]

Tags: gaucher treatment

Time To Get Kyle Some More Help

Posted by Melissa | Filed under Appointments, Gaucher Disease

It’s no secret that Kyle is developmentally behind, and with his first birthday fast approaching, I think it’s time to get him some real help so he can get on track.
When I spoke to one of Kyle’s specialists about physical therapy and the like for Kyle, he said we could look into that if we [...]

Tags: Gaucher Disease

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 [...]

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 [...]

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