2009 May |

Archive for May, 2009

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 [...]

Researchers believe they have found genetic cause for Parkinson’s disease

Posted by Melissa | Filed under Research

Article Source: http://mdn.mainichi.jp/mdnnews/news/20090513p2a00m0na010000c.html
A team led by Shoji Tsuji of the University of Tokyo, and Tatsushi Toda of Kobe University discovered that those with a mutation in a gene called GBA are 28 times more likely to contract Parkinson’s disease. They now hope to use their finding to explain exactly how the disease is caused, and [...]

Tags: Gaucher Disease, genetic, Research

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 [...]

My Cherished Angel

Posted by Melissa | Filed under Pictures

First Treatment Date Set

Posted by Melissa | Filed under Appointments, Treatment

Finally, some progress has been made – we have a date for Kyle’s first enzyme replacement therapy session.
His appointment was originally set for tomorrow, but unfortunately, his Doctor was not able to be there to supervise his treatment, and then the doctor they had lined up to replace Kyle’s doctor is also away. So with no doctor available to supervise him [...]

How old is your baby?

Posted by Melissa | Filed under Home Life

This is a question I get asked a lot, the same as any other mom. So when we’re out running errands, the check-out gals, the grandmothers, and other mothers are all asking, “How old is your baby?”
So when I say that he is 10-months old, you can see the surprise and question in their eyes. [...]

Tags: baby, gaucher

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