Contact

Posted by Melissa

To get in touch with us, please email kyle@acherishedangel.com.

Permalink | Comments (4) | Apr 28, 2009

4 Responses to “Contact”

  1. Kia H. from Maryland Says:
    April 24th, 2010 at 10:37 pm

    I was wondering if the doctors told me that type 2 is the most fatal and that my daughter was progressing fast. She started having problems when she was 3 months old and then she was hospitalized in oct. of 09. In Nov. of 09 she got a feeding tube, then in dec. 09′ she got a tracheotomy. She was then sent home with doctors thinking it was another diagnosis and was treating that diagnosis. So she was sent home in the end of dec. 09′ But she was continuing to get this infusion called IVIG which wasn’t really working but my daughter ended up going back to the hosp. in Feb. 10′ and has been in there since and she finally got the diagnosis of Gaucher Disease type II. Do you think the doctors should at least try the Cerezyme? They told me that there is nothing that they can do.

  2. Melissa Says:
    April 24th, 2010 at 10:45 pm

    I am so sorry to hear about your daughter. I have no idea why your doctors didn’t start her on Cerezyme as soon as she was diagnosed with GD. Without it, Gaucher cells are going to continue building and building in your daughters organs and she’s going to get worse a lot faster. My son has been on Cerezyme for almost a year now and the quality of his life has sky rocketed because of it.

    I’ve read of adults with Type 1 saying how awful they felt, how bad their lives were before they started Cerezyme. Our kids can’t tell us how they feel, but you can bet they feel horrid. Cerezyme won’t do anything for our children’s brains, but it will fix everything else. I would look into this immediately, if only to give her a better quality of life for as long as she is here.

    Melissa

  3. Kia H. Says:
    April 24th, 2010 at 11:40 pm

    I am defeitely try and get her started on the Cerezyme treatment becuase I dont know how much has leaked into her brain and she just got diagnosed yesterday thats when I found out. They were having trouble diagnosing her and now that she got a bone marrow study this monday the had a family meeting on friday and thats her father and I found out. I feel that they should start her on it ASAP but I don’t know how to go about doing it. The genetics doctor was just so adament about there is nothing to do for her, he didn’t bring up any type of solution. So that is why I am doing research myself and came across your story and I am just now hearing about this.

  4. Kia H. Says:
    April 25th, 2010 at 10:33 am

    I dont know what happened to my last comment but how do I go about telling the doctors that I want them to try her on the Cerezyme treatment? And if you don’t mind answering this question do you live in the USA or Canada since they are paying for all your sons medical treatments? And also how do you apply for the paperwork for the Genzyme?

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