Thursday, April 16, 2009

Stretching as we Grow


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!

15 comments:

Samantha (Sam) Spitzer said...

Yes! This is a wonderful, happy, joyous, delicious post!

Pam Corwin, Business of Crafts said...

Colleen - What a great thing! YAY!!!

Colleen MacDonald said...

I know; I'm bursting with joy on the inside!

juglans said...

Amazing!!! I am very interested to read more about this folic acid approach.

I am tearing up thinking of you all - love from KY - Such positive news! I needed it today :>

Stephanie said...

Wow, how amazing and inspiring. Good for you for seeking alternative methods and I am so happy they are working so well.

Kiwi Arts said...

Wonderful News! I am so happy for the three of you! Your patience, and persistance has paid off. Keep up the hard work while you continue to look at the glass half full - never half empty. She is very lucky to have a mother like you!
Beth

Colleen MacDonald said...

Thanks you all! It is so important to be part of a supportive community! My glass is half full because I have friends who help turn on the tap when needed.

stardrum said...

How did I get so lucky as to have the awesome daughter you are? I am so proud of the mom you are, the entrepreneur you are, the beautiful light you are in the world. I could never tell you how MUCH I adore you. And LUCKY to get that beautiful bag!

Jenni said...

Oh, this is such wonderful news! Hooray for her and for you. Thank you for sharing such joyful news! What a strong girl and a strong mom.

Katie said...

Science is such an amazing thing - I'm so happy that this alternative treatment is working for your daughter! I hope you'll continue to post her achievements <3

Victoria said...

Oh my goodness, she is my hero, too! I have tears in my eyes. What a journey... I can not imagine how heartbreakingly difficult it must have been to watch your sweet angel go through all of those seizures, and how incredibly joyful it must be to see her now doing so well! You are such a wonderful mother Colleen, and Bronwyn is such a beautiful strong and courageous young girl. What an inspiration you two are!

The Mayberry Sparrow said...

I'm SO thrilled that this has been working so well for your daughter, Colleen!! What a miracle! She's fortunate to have such a persistant and caring mother. I can't imagine how difficult it would be to see my child suffer.

I'll keep you guys in my thoughts& prayers. I'm SO happy for her!

vadjutka said...

OMG, this is great news!! I am soooo happy for you! She must be a very clever girl!

*sending big hugs to you all!*

Colleen MacDonald said...

I'll keep you all posted on her progress; it's slow but happening!

joanne said...

this post almost made me cry from happiness. i know i don't know you (except through twitter - i'm lilcoastergnome!) but i'm soooo happy to hear about bronwyn's progress!!! it takes a strong family to go through something like this, and i'm so happy to hear that things are finally working to your advantage. i wish her the best of luck with everything, and i hope she continues to get even better!!!