Fairy Dreamfinder
Earning My Ears
- Joined
- Jul 30, 2014
- Messages
- 36
Hello All,
My name is Robyn and this is the first post of the story of our MAW journey. I and my husband, Roy, have two dear princesses, Katie (10) and Cassie (6).
Cassie has the rare and life-threatening medical condition, Methylmalonic Acidemia. It is an inborn error of metabolism where she cannot process certain amino acids in protein. Instead, her body accumulates toxic levels of methylmalonic acid and ammonia. She had her initial metabolic crisis when she was three days old. She was having an adverse reaction to the infant Hep-B shot, and presented the MMA earlier and more violently than most. She quit breathing and we almost lost her. She underwent hemo-dialysis before she was even a week old. She was in the NICU for over six weeks stabilizing and recovering. As a result of this crisis, she has static encephalepathy and severe developmental delays. Her mental age is only 18 months even though she is now six years old. She is non-verbal and uses a g-tube for all of her nutritional needs. If the delicate balance we have managed to achieve with her metabolism is disrupted, another crisis can occur. These episodes are very scary (especially for her parents), as they could disable or even kill her in a matter of hours if not quickly treated. If I come across as short at times, please remember that I am under a great deal of stress, even if she does appear to be currently healthy.
I will be posting pictures once I figure out the whole web image hosting thing.
My name is Robyn and this is the first post of the story of our MAW journey. I and my husband, Roy, have two dear princesses, Katie (10) and Cassie (6).
Cassie has the rare and life-threatening medical condition, Methylmalonic Acidemia. It is an inborn error of metabolism where she cannot process certain amino acids in protein. Instead, her body accumulates toxic levels of methylmalonic acid and ammonia. She had her initial metabolic crisis when she was three days old. She was having an adverse reaction to the infant Hep-B shot, and presented the MMA earlier and more violently than most. She quit breathing and we almost lost her. She underwent hemo-dialysis before she was even a week old. She was in the NICU for over six weeks stabilizing and recovering. As a result of this crisis, she has static encephalepathy and severe developmental delays. Her mental age is only 18 months even though she is now six years old. She is non-verbal and uses a g-tube for all of her nutritional needs. If the delicate balance we have managed to achieve with her metabolism is disrupted, another crisis can occur. These episodes are very scary (especially for her parents), as they could disable or even kill her in a matter of hours if not quickly treated. If I come across as short at times, please remember that I am under a great deal of stress, even if she does appear to be currently healthy.
I will be posting pictures once I figure out the whole web image hosting thing.
I ordered it immediately, and breathed a sigh of relief when the order was confirmed. I couldn't wait for her to receive this for her birthday and then she would be able to wear it for her wish!
I called customer services first thing in the morning (that's right, the morning of HER BIRTHDAY). I found myself bawling as I tried to explain to the CM on the other side the very big significance of this purchase. (I don't usually have the ability to purchase such frivolities, but this was once-in-a-lifetime SPECIAL!) My worst suspicions were confirmed, there would be no dress. 
She apologized profusely, but insisted that there was nothing that could be done as there wasn't any more available anywhere. Disappointed, I hung up the phone and dried the tears.
