This is a place for me, Gabrielle's Mother, to share my thoughts, current and previous, about the ordeal we experienced while trying to find a diagnosis. The purpose of this diary is to educate and create awareness for parents who are lost in their search for finding a diagnosis and a cure for their children, who may have Niemann-Pick Type C. For more information, visit us on Gabrielle's website, http://www.GabrielleLaVerde.com
Wednesday, February 20, 2008
Welcome
Welcome to Gabrielle LaVerde's Blog. My name is Danielle LaVerde, and I will be adding comments to this blog to help increase awareness, provide information, and solicit help to find a cure for Niemann-Pick Disease Type C.
For my first blog, I'd like to introduce you to the short version of our story. After 5 and a half years of struggling to get pregnant, we were blessed with the most beautiful little girl we could imagine. For the first 18 months, everything was perfect. She was bright-eyed and bushy-tailed, constantly pointing at everything asking "watsat?" Before she turned two, we noticed that she was not keeping up. For two years her pediatrician insisted that "she's perfect and she'll catch up". When she turned four, we took her to a new doctor who immediately sent us to the best specialists in Central Florida. It took years of testing and visits with multiple experts in multiple fields to finally find a diagnosis. We had prayed for years - - we begged God every single day to deliver her from whatever was wrong. But when we finally got our answer, it was beyond devastating. I thought my heart would burst from pain.
But Gabrielle is so much more than Niemann-Pick. She is sweet and loving. She has a wonderful sense of humor. She understands everything that is said to her. She knows exactly what she wants. She is independent and gets angry with herself when her body won't cooperate with her mind. She loves movies and she loves to eat (especially chocolate)! She enjoys being around other people and while her nature is to be friendly, she knows she is different and she knows she can't keep up. This frustrates her immensely.
It breaks my heart every single day that I don't know how to help her. My child is suffering and I don't know how to fix it. While we've learn how to read her non verbal cues, most of the time she doesn't give us any. We have to guess at whether or not she's hungry or thirsty. I never know if she's in pain. There are times she simply begins to cry for no apparent reason and we simply can't figure out what is wrong. That is something no child should have to suffer.
My hope is to utilize this site and this blog to bring attention to NPC by putting a lovely, angelic face on it - - my daughter's.
As the parent of a child with developmental and health problems, my goal is to try to find the miracle in each day. Sometimes, it’s as small as “she ate well” or “she didn’t become hysterical when I rinsed her hair during her bath”. Other days, bigger things happen:
Yesterday, she really showed her sense of humor when she tried to pinch Daddy - - twice! She found herself absolutely hysterical! And today, she turned off the bathroom light as though it was something she did everyday - - she hasn’t done that in years.
What stunned me was how effortlessly she did this. Both of these actions were voluntary and intentional. We are so proud of her!
Today was so exciting! I was honored to get the chance to bring awareness to NPC when I was contacted by a television reporter interested who was interested in our story. We met him today at a local park and will be on TV tonight! This all thanks to the aunt of one of Gabrielle's school mates, who posted a blog about her on the station's site. I pray our story will bring this disease to the attention of the public and hopefully save a family from going through what we did for a diagnosis.
Gabrielle and Danielle LaVerde on Fox 33 http://www.myfoxorlando.com/myfox/pages/Home/Detail;jsessionid=C0A93F018E2AF589C52619ECD6C09AF9?contentId=5916783&version=1&locale=EN-US&layoutCode=VSTY&pageId=1.1.1&sflg=1
When I was reading about your beautifull daughter, I thought of this herb that helps the liver, It's with no side effects. It's not a miracle cure but it can help her I hope a little. You can research the net yourself on this. She's an angel and so beautifull. Have faith in what you can do for her. Good luck. Kalou
I don't know how often you check this but after hearing your story it was like listening to my own childs. for the first time I see someone else like her. Except, we haven't received a diagnosis yet. We go to Kennedy Krieger on May 2nd. Anna is 6 and her balance and speech are getting worse. There are gaps or breaks that would last a while and it would appear it was autism or from mild cp. But when she is sick, forget it she can't walk and can hardly talk. She fatigues easy and keeps asking me to get her a wheelchair. I told her we have to wait until May and she still keeps asking. Often she hallucinates now, and her pet mal siezures seem to be at night when she wakes. She sais her legs are heavy. I swear reading about gabriel was like erriely familiar to me. Now we wait for one more disease to get crossed off the list. I hope Nemann-Pick is crossed off, but after having seen the endominable love and spirit of others I can handle anything about now.
you can email me anytime minormary@gmail.com or call my cell at 540.219.5208
Advocating for my daughter has now become my full time job...I am glad to not be in this work alone and sad too that I am not in this work alone.
We've emailed privately about the similarities between our girls, but I wanted to post a quick comment on the blog.
I'm thinking about you as May 2 approaches. Please keep me updated and let me know how it goes at KKI. I will be praying for Anna and your family for a safe trip and a good report!
8 comments:
For my first blog, I'd like to introduce you to the short version of our story. After 5 and a half years of struggling to get pregnant, we were blessed with the most beautiful little girl we could imagine. For the first 18 months, everything was perfect. She was bright-eyed and bushy-tailed, constantly pointing at everything asking "watsat?" Before she turned two, we noticed that she was not keeping up. For two years her pediatrician insisted that "she's perfect and she'll catch up". When she turned four, we took her to a new doctor who immediately sent us to the best specialists in Central Florida. It took years of testing and visits with multiple experts in multiple fields to finally find a diagnosis. We had prayed for years - - we begged God every single day to deliver her from whatever was wrong. But when we finally got our answer, it was beyond devastating. I thought my heart would burst from pain.
But Gabrielle is so much more than Niemann-Pick. She is sweet and loving. She has a wonderful sense of humor. She understands everything that is said to her. She knows exactly what she wants. She is independent and gets angry with herself when her body won't cooperate with her mind. She loves movies and she loves to eat (especially chocolate)! She enjoys being around other people and while her nature is to be friendly, she knows she is different and she knows she can't keep up. This frustrates her immensely.
It breaks my heart every single day that I don't know how to help her. My child is suffering and I don't know how to fix it. While we've learn how to read her non verbal cues, most of the time she doesn't give us any. We have to guess at whether or not she's hungry or thirsty. I never know if she's in pain. There are times she simply begins to cry for no apparent reason and we simply can't figure out what is wrong. That is something no child should have to suffer.
My hope is to utilize this site and this blog to bring attention to NPC by putting a lovely, angelic face on it - - my daughter's.
As the parent of a child with developmental and health problems, my goal is to try to find the miracle in each day. Sometimes, it’s as small as “she ate well” or “she didn’t become hysterical when I rinsed her hair during her bath”. Other days, bigger things happen:
Yesterday, she really showed her sense of humor when she tried to pinch Daddy - - twice! She found herself absolutely hysterical! And today, she turned off the bathroom light as though it was something she did everyday - - she hasn’t done that in years.
What stunned me was how effortlessly she did this. Both of these actions were voluntary and intentional. We are so proud of her!
Today was so exciting! I was honored to get the chance to bring awareness to NPC when I was contacted by a television reporter interested who was interested in our story. We met him today at a local park and will be on TV tonight! This all thanks to the aunt of one of Gabrielle's school mates, who posted a blog about her on the station's site. I pray our story will bring this disease to the attention of the public and hopefully save a family from going through what we did for a diagnosis.
Gabrielle and Danielle LaVerde on Fox 33
http://www.myfoxorlando.com/myfox/pages/Home/Detail;jsessionid=C0A93F018E2AF589C52619ECD6C09AF9?contentId=5916783&version=1&locale=EN-US&layoutCode=VSTY&pageId=1.1.1&sflg=1
When I was reading about your beautifull daughter, I thought of this herb that helps the liver, It's with no side effects. It's not a miracle cure but it can help her I hope a little. You can research the net yourself on this. She's an angel and so beautifull. Have faith in what you can do for her. Good luck. Kalou
http://en.wikipedia.org/wiki/Milk_thistle
I don't know how often you check this but after hearing your story it was like listening to my own childs. for the first time I see someone else like her. Except, we haven't received a diagnosis yet. We go to Kennedy Krieger on May 2nd.
Anna is 6 and her balance and speech are getting worse. There are gaps or breaks that would last a while and it would appear it was autism or from mild cp. But when she is sick, forget it she can't walk and can hardly talk. She fatigues easy and keeps asking me to get her a wheelchair. I told her we have to wait until May and she still keeps asking. Often she hallucinates now, and her pet mal siezures seem to be at night when she wakes. She sais her legs are heavy.
I swear reading about gabriel was like erriely familiar to me. Now we wait for one more disease to get crossed off the list. I hope Nemann-Pick is crossed off, but after having seen the endominable love and spirit of others I can handle anything about now.
you can email me anytime minormary@gmail.com or call my cell at 540.219.5208
Advocating for my daughter has now become my full time job...I am glad to not be in this work alone and sad too that I am not in this work alone.
Kalou:
I'm so sorry that I haven't responded sooner to your blog. Gabrielle has been sick off and on for weeks and that has diverted much of my attention.
Thank you for checking out her site & taking the time to post. Thank you too for the lead on the herb. I will definitely check it out.
I appreciate your support. It's so nice to know that there are people out there who care.
Mary:
We've emailed privately about the similarities between our girls, but I wanted to post a quick comment on the blog.
I'm thinking about you as May 2 approaches. Please keep me updated and let me know how it goes at KKI. I will be praying for Anna and your family for a safe trip and a good report!
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