Monday, June 20, 2011

Hope For Carsen

Hello Friends of the Blogoshpere this is my friend Carsen,

video


I have known Carsen since she was born. Carsen's Mom, Amanda, and I met on a Mom's forum when we were pregnant with our Little's. I have never met Amanda in person. She lives in the United States and I am up here in Canada. It doesn't mean that I couldn't tell what an awesome mommy she would make in the very near future. As a group we spent months gushing over our impending births with each other. Celebrating the first birth to the last. Now as mothers we celebrate each milestone of our Little's with gusto. We just had our first crawler a few weeks ago. (How exciting!)

It became clear as time went on that Carsen was different than all the other babies in our blessed little group. At two months old Carsen was diagnosed with Optic Nerve Hypoplasia (ONH). This came after two hospital stays and many blood tests.

ONH is a medical condition that results in the underdevelopment or absense of the optic nerve(s) combined with possible brain and endocrine abnormalities. ONH is also known as de Morsier's Syndrome or septo-optic displasia and is the SINGLE leading cause of blindness and visual impairment in children. The abnormalities caused by ONH can be minor with no noticable abnormailies or it can be quite severe. Areas that can be affected are gross and fine motor skills, intelligence, speech, social interactions. In some cases these children can also have seizures. Another affect of Optic Nerve Hypoplasia is that it can effect the development of the pituitary gland. This gland is the master controller of the body. It makes and directs important hormones required for growth, energy control and sexual developement. When the pituitary gland doesn't make the hormones correctly it's called hypopituitarism. This further affects the thyroid and the production of cortisol as the pituitary gland signals the adrenal glands to produce cortisal. Cortisol is needed in times of physical and emotional stress. Something as simple as getting a cold can send a child with this abnormaility into distress, cause the body to shut down and has led to death. On top of all of this you can have developmental problems with the sex hormones, low blood sugar and if the body is producing too much ADH which causes the body to produce too much urine, the child can end up with urinary tract infections. Just one other thing that will affect the cortisol levels. Carsen has mental disabilities, hypopituitarism and central diabetes insipidus as well. She is currently on four medications for her hormones, and a special diluted formula for the diabetes.

Amanda's pregnancy dreams and future wishes for her daughter seemed to disappear into thin air overnight. She was at a loss on what to do or where to turn. And this is where my post "Hope For Carsen" comes in to play.

Amanda had done a lot of research on her daughters condition and of course went on a desperate search for a cure. There is no real cure for Carsen. Not yet anyways. Amanda has found the next best thing. Stem Cell Therapy being done in China. The stem cell therapy is touted to help the patient obtain more of their eyesight. The cost is steep and insurance doesn't cover the costs. Now Amanda is reaching out to those she knows in hopes of finding a way to give her daughter more of a comfortable future than she currently is facing.

Amanda's hope for Carsen in her own words:


"We were devestated when we found out. She is our first child. Carsen is also deaf in her right ear, so she is struggling to learn against all odds. Just knowing that there is a possible cure for her vision is just the hope my husband and I need for Carsen's future. She just deserves this. After everything going against her, I feel that gaining vision with be the silver lining in her life journey. They say 90% of your learning comes from your vision. So with no vision accompanied with one deaf ear and mental disabilities, it is extremely scary to think about the future. And of course selfishly I just want her to see me. Her Mommy. To be able to tell my apart from other people. I want her to cry when she sees me leave the room. I want her to some day reach out for me. I want the world for her and I can't give her that. But I CAN dedicate my life to making her the best she can be. And that is what I will do."


HOW YOU CAN HELP

To be able to get to China for this therapy Amanda and Carsen need your help. One of the avenues we have been considering going is making a plea to The Ellen DeGeneres Show. We know that Ellen has helped many in their plights, and we feel that Ellen would be one of the best chances Amanda and Carsen have to get them that much closer to Amanda's dream of having her first born see her. Even if it's just a little. We need you to help us get our plea of Hope for Carsen to Ellen Degeneres. Linked below is The Ellen Degeneres Show FB Page, as well as her twitter account.

The Ellen DeGeneres Show FB Page
Ellen DeGeners Twitter Account

These last two links provide more information on Optic Nerve Hypoplasia as well as just one of the stories you will find on the ONH Stem Cell Therapy site

ONH Booklet

Hope For Hallie

Please, if you do nothing else today. Pass this plea on to The Ellen DeGeneres Show. Help Carsen have the chance at sight. Our Mom's group will be doing just this. For Carsen.

Thank you so very much for taking the time to finish this post.

12 comments:

  1. The video of Carsen is just precious! I will post this on the Ellen page and pray for help for them. Thanks for sharing little Carsen's story.

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  2. I sent Ellen an email with the link to this post. I hope she can help Carsen.

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  3. I am putting the link on Ellen's Facebook page! I hope she can help Carsen :) we love her so much!

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  4. Excellent job!!! I pray that this little angel gets to see her Momma!

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  5. Tweet complete! I hope Ellen can help Carsen.

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  6. Carsen is so adorable.
    I feel so sad to hear about her.
    I will do something to help her.

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  7. I want to say thank you to each and every one of you who responded, those who didn't and shared this post, and those who just took the time to read about precious Carsen.

    I have over 300 hits to this page and really hoping Ellen DeGeneres or someone else who can help has seen this page. I'm not giving up until I hear something. God Bless you all :D

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  8. Oh saying a prayer for the little guy!

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  9. I'm so sorry that your friend is struggling with this. She is right - her daughter deserves whatever treatment is available. I'll definitely try to generate awareness among Ellen and her peeps via Twitter and I truly hope we all can help little Carsen.

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  10. This post brought me to tears. What a beautiful little girl. I cannot even imagine the struggles that she and her family have faced and will have to face in the future. Carsen and her family will be in my thoughts and prayers.

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  11. This is fantastic, what a great way to get our message across! will def post on Ellen's FB page :) xx

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