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Dakota Anderson

Dakota Anderson

Basic Information:

Birthday: June 26, 2005
Age: 13 yrs
Diagnosis: Neurofibromatosis
Health Status: Fighting Strong
Favorite Things: Music, horses, panda bears, crafts, art stuff, Carrie Underwood, volleyball,
Stuff About Me: Dakota is 12 years old and in the 7th grade

About Me:

My Story: Dakota was born June 26, 2005. She was just a couple of weeks old when I first noticed what I thought were 2 birth marks on her leg. At her 2 month check up I pointed them out to her pediatrician. She seemed a little concerned and measured them and noted them in her file. She called them cafe au lait spots. She told me that we would watch for any more and then told me a big name, that I could later not remember, and said that this could be what the elephant man had. Inside I laughed to myself and thought how could 2 flat brown spots turn into what the elephant man had.

I left her office and didn't think of it again for another month when I noticed she was getting a few more. I then started to think back to the conversation at the doctors office and all I could remember was cafe au lait spots. I then got on line and googled it. Up came that big word the doctor had mentioned. Neurofibromatosis. From that moment on our lives have not been the same. I have been obsessed with finding out all the info I can on this disease. And no Neurofibromatosis is not what the Elephant man had. He had Proteus syndrome.

When I took Dakota back for her 4 month check up she had probably 6 or 7 spots. She then referred us to the Genetics specialist. The geneticist told us that 90 percent chance that she did have Neurofibromatosis Type 1 but if we wanted to do the blood testing we could. So we did. It came back positive for NF 1. She is the first one in our family to have it.

Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time. This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States (one in every 3,000 to 4,000 births).

She has been pretty healthy up until she was about 18 months old when she started having what we call "episodes". In January 2007 she started having balance problems. A couple of times a month she would have trouble walking and holding herself up. In February we had her tested for seizures. That came back normal. One day in March, the 15th to be exact, she could not stand up in her crib. She kept falling over and over as she was trying to get up. I called the doctor and she said take her to the Emergency Room. They did a CT scan and found a mass in her brain. Later to be diagnosed, with an MRI, as a hypothalamic chiasmatic glioma (brain tumor) involving both optic nerves and tracts. We were devastated.

Since then she has had 7 more MRI's that have shown slight growths in the tumor and the last MRI showed a slight decrease. She sees the ophthalmologist every three months and sees the Oncologist and Neurologist every 6 months and not to leave out the Endocrinologist every 6 months.

We are praying that the tumor becomes stable and that she will not have to endure 1 to 2 years of Chemotherapy.

Right now we just want her to be a healthy, happy and active 3 year old.

Here is an overview of Dakota's history.

7 months old- Eye exam shows no sign of optic glioma

10 months old - Official Diagnosis of NF-1

18 Months old - Start of balance problems

19 Months old - EEG, Normal

22 Months old - CT Scans discovers mass in brain

22 Months old - Eye exam shows no evidence of optic nerve glioma

22 Months old - 1st MRI reveals chiasmatic optic pathway glioma

23 months old- 2nd MRI shows slight growth

23 months old - Endocrine testing, normal

2 years 1 month old - eye exam shows optic nerve more swollen and more pale color than prior exam

2 years 2 months old - 3rd MRI shows slight growth

2 years 5 months old - 4th MRI shows more growth

2 years 8 months old - 5th MRI shows tumor stable with 2 new areas of enhancement

2 years 11 months old - 6th MRI shows slight decrease in optic glioma and decrease in enhancement

2 years 11 months old - Endocrine testing shows growth hormone levels abnormally high.

3 years 5 months old- 7th MRI shows stable optic glioma with decrease in enhancement

3 years 10 months old-Eyes exam shows vision loss in right eye

3 years 11 months old-8th MRI shows stable optic glioma

My Family:

My Mom: April Anderson
My Dad: Mike Anderson
Siblings: Taylor 21
Erica 18
Mackenzie 11
Pets Names: Jake and Sophie

Happy Mail Address:

Happy Mail Address: P.O. Box 111
El Nido, CA 95317

Hospital Information:

Room Number: