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:
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
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.