Scott and Bridget met in 1993 and were married in 2001. In September of 2003 we welcomed our first miracle, James. 16 months later we brought home our second miracle, Annie. And in October of 2006 our family was complete with miracle #3, Gracie. Rett syndrome entered our lives when Annie was diagnosed on May 19, 2006. This is the life of the MacDonald family as we juggle 3 small children and battle Rett Syndrome until Gods perfect time when we are cured.

Friday, February 5, 2010

Rough Go

Annie's had a rough time lately. I can't put my finger on it. Things have just been a little different with her. Eating (orally) has been tough, lots of coughing and gagging and very little actual consumption. Drinking has also been a struggle. Sleeping, which has always been an issue, seems to be different as well. Same amount of night wakings but now there aren't as many naps to make up for it durring the day. Annie's been struggling to fall asleep for a nap and once she does she wakes up just a couple minutes later, she looks so tired. She's very restless and has been crying more. Her poor body is being rocked by Rett and as her mom I am reminded again and again of how powerless I am against this horrible disease and all that it has stolen from my baby. Just when I think it can't take anymore it comes and steals again. My heart breaks. Annie's cries bring storm clouds and thunder but I know her smile will return and bring back the sun. I sit and pray for a cure, pray for our researchers and brighter days. At times like this I like to look back at the promising research, like our reversal! And the hope of our cure that is not just from a desperate mother but straight from the scientists themselves, like this interview with Dr. Monica Justice. And then of course plea for money - without funding the research stops and rett wins. If you would like to help unlock Annie and the thousands of girls like her from the grips of rett syndrome please consider donating to research here. Please join me in praying for a cure.

1 comment:

  1. My heart aches with you as you are in this season. I will be keeping Annie in my prayers that her body will let her rest and have peace. Claire started with dribbling and eating problems a few weeks ago, it was certainly from being tired. Once her sleep improved oral motor did too. hugs to you today