Today I want to share a little personal story of good news and hope for the future. As many of you know, my daughter, Bronwyn, has multiple neurological difficulties including epilepsy. Bronwyn's seizures are of a type that are very difficult to control because they don't always occur in the same region of the brain and because they are triggered by a multitude of things. Since the age of two, Bronwyn has been taking a variety of different medicines to help regulate her brain activity, but she continued to have between 60 and 100 seizures every day!
Last spring, my husband and I learned about new brain research that was being conducted at the Children's Hospital in Texas by Dr. Mary Kay Koening. This research showed that some children, who display symptoms like Bronwyn's, have a genetic disorder that prevents them from being able to break down folic acid, a vitamin critical to the proper development of the brain. This disorder is named Cerebral Folate Deficiency or CFD. The great news is that this is treatable and, if you treat early enough, it is CURABLE! Bronwyn began taking a special form of folic acid that doesn't make her body work to break it down. After she had been taking it for about 5 months, she started to have fewer siezures: about 10 per day! WOW. After 6 months she was having 6 per day. Now it's been a year and sometimes she doesn't have ANY siezures in a day...AND we're begining the process of weaning her off of one of her medicines. I can't tell you how much improvement this has given all of our lives; Bronwyn is not so tired and is gaining weight and learning so much. Brian and I are less tired, too!
Yesterday, I was having Bronwyn do some yoga poses. This is very difficult for her because her muscles don't get the right messages at the right time. She is always wiggling and alternating between having stiff straight muscle tone to having floppy muscle tone. But we were in a sun spot on the floor and good music was on, and the mood was just right. I put Bronwyn in Child's Pose and was massaging her back. And she stayed in that pose! It was amazing! I ran and got the camera, and she was able to hold the pose for a few minutes longer so that I could capture it for her therapist to see. HOORAY Bronwyn, you are my hero! Never give up; NEVER!