Brianna B. - Quilt Finished in 2002

Born: September 22, 1994

Illness: Canavan Leukodystrophy, a neurological disorder

A Thank-You From Brianna's Family!

The quilt is so beautiful!  Everyone in my family, including Brianna's therapist, that has seen it so far just loves it.  I have it on her bed it matches her room to a "T" with the colors in it, thank you so so much.  When I was holding it close to Brianna to see her eyes were just looking and looking at it and then she smiled, I think she knew the love that came with it.  Brianna's therapist liked it so much they asked how they could help and do stuff like that.  I gave them the web site address.   They said it makes them want to get involved and do something too.  Thank you.  Yulinda and Brianna

Brianna's Story

written by mom Yulinda

I had a normal pregnancy with Brianna but other than that, I did have a great deal of stress. During my pregnancy my grandma, uncle, two cousins, and an aunt all passed away. My grandma and uncle and I were pretty close considering they lived next door and two doors from me my whole life. I went into labor on September 21st and finally in the afternoon on the 22nd I had my precious little girl. She was 7lb. 3½ oz. and 21 inches long. She had some yellow jaundice and had to be under lights for 24 hours. When the nurse would bring Brianna to me, her arms and legs would just tremor. I had an instant instinct that something was not right. When she was released from the hospital during her first month of life I had taken her to three doctors which all told me it was Tremors of Childhood and not to worry about it. But I felt that there was more to it and took her to yet another doctor. Right away that doctor said there is something going on and started her testing.

By three months old we were sent to our Neurologist. He too started a battery of test. At ten months we were diagnosed. My heart sank. "Your child has Canavan Leukodystrophy". The doctor at that time was telling me that my daughter had 2-3 years life expectancy. The best thing I can do is keep her as loose as I can as long as I can. Canavan Leukodystrophy is a rare inherited neurological disorder. The gene mutation prevents the production of an enzyme called Aspartoacyclase. Without this enzyme an acid called N-Acetylaspartate builds up and starts destroying the myelin. Which is the central nervous system's white matter. The destruction of myelin leaves Canavan Children incapable of performing the simplest functions. Brianna at this point was considered legally blind (she could see but not very well), she has limited head control. She cannot sit without support nor stand or walk even. I can never hear her say "I love you Mommy" Brianna is 100% dependant on me. With the newer medical technology her life expectancy has grown to 3-10 years with a possibility of early teen's although there are a couple Canavan children in there early 20's.

Brianna has had a number of hospital visits. At the beginning it was for dehydration. I had a very difficult time getting her to eat. And when she would it was not enough to keep herself hydrated. The doctor kept pressing for me to get the feeding tube put in. I felt that if I done that then it was a sign that she was slipping away. By 2 years old and after being in the hospital every other week for a month, I decided that enough was enough. We got the feeding tube. I now regret not doing it sooner. She has been much healthier since we got the tube. We still had our bouts with pneumonia, and bronchitis but not as often.

In March of 1998 Brianna was a participant in an experimental gene therapy. Being the 5th child to ever receive this treatment. It has shown some great improvements in her but unfortunately not enough. With recent MRI's they show that Brianna has had severe white matter loss and some deep secondary atrophy as well (gray matter loss underneath the white matter). This having happened, the researchers for Canavan are not willing to treat Brianna again for gene therapy in fear that it could cause more damage than it would help her. I am in agreement with the researchers and now we are basically just waiting the disease out. It is not so much Canavan that can put our children at risk but catching illness like pneumonia and bronchitis and having there system not being strong enough to fight them off. I can thank the Lord for it has been 4 years now since she has been in the hospital for any illness's. We have had minor colds or ear infections. But nothing major. Brianna is in the 6th grade having her teachers come to the home. She receives physical and occupational therapy through school also. She has been staying healthy and happy and full of laughter.

Brianna's older sister Donika is a true joy to have around also. She really enjoys playing with Brianna, that is when she is not busy with her sports. Donika loves to play her sports, she does cross country, cheerleading, softball. And she also is in Band playing the flute and piccolo, 4-H, Church choir, Key club, FFA, an office aid. Donika loves to keep busy at all times. She is still on Honor roll at school and received an award called the United States Achievement Academy National Physical Education Award along with there Leadership and Service award and has now made the National Honor Roll 2 years in a row. Donika is a wonderful and sweet child. With all that she has been through with her sister and my limited time to give her, she has shown through it all. She is a very happy and loving young lady. With a huge heart for those around her.

My girls are my everything, and I thank God for everyday I have them.