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Elizabeth Lee Hallam 
to Elizabeth's website.
This site has info on our journey with Elizabeth and the genetic disease Spinal Muscular Atrophy.
She was diagnosed with SMA (Spinal Muscular Atrophy) on 5-11-2004. She has Type 1.
Spinal Muscular Atrophy is the #1 genetic killer of children under age two. It is a group of inherited and sometimes fatal diseases that destroys the nerves controlling voluntary movement. This affects crawling, walking, head and neck control, and even swallowing.
One in 6,000 babies is afflicted with SMA, and 50% of those diagnosed before age 2 will die before their first birthday.
One in 40 people are carriers of the SMA gene.
What causes Spinal Muscular Atrophy?
SMA is cased by a defect in a gene found on chromosome 5. This gene codes for a protein called survival motor neuron (SMN) protein. The precise role of this protein is not understood, however its absence results in degeneration of the lower motor neurons. This in turn leads to the symptoms of SMA.
Nerve impulses, which travel from the brain, along the spinal cord and onto motor neurons, control when and how muscles move. Motor neurons are nerve fibres with long threadlike extensions, called axons. These fibres enter the muscle and branch extensively, forming connections with one or many muscle cells. When we decide to move, the motor neuron transmits the command to the muscle. When the motor neuron is damaged, as in SMA, the command to move does not reach the muscle and the muscle is paralysed. As the body works on a “use it or lose it” principle, over time the muscle becomes accustomed to not working and accordingly reduces in size and strength. This gives the characteristic symptoms of muscle weakness and wasting of SMA.
The neurons affected in SMA are the lower motor neurons. These neurons are found in a specific part of the spinal cord, whereas the upper motor neurons reside in the brain. This means that the brain is not affected. SMA does not affect the sensory neurons, which carry information about sensation, so that feelings of touch, heat, pressure and pain all remain normal.
 
My name is Elizabeth Lee Hallam.
I was born September 29, 2003.
I am going to California to Stanford University with my Mommy and my grandmother Jeanna to see if they can help cure me and other babies like me.
Dr. Ching Wang has done research on SMA and is so close to a cure. I am going to help Dr. Ching Wang get FDA approval for his therapy to fight this deadly disease.
I am smart, beautiful and a rocking fairy princess!
I am special because I am going to help fight SMA by helping with the clinical trials, to save babies like me.
I think I was sent here from God to special people who will care for me, love me, and fight to cure me.
Please donate to my mission in this life, which is saving lives.
Love, Elizabeth
I love my Papa!
My Mommy is the best!
My best friends are my cousin Caitlyn and my dog Pepper!
 YEAH
 
You're listening to: "Shall We Dance" from The King and I
Journal
Monday, November 17, 2008 10:10 PM CST Lizzy seems to be doing great today. She has been sick off and on for about 3 weeks. I am NOT understanding this but I am happy she seems to be a lot better than yesterday. She has more secretions but everything is clear. Thats a good thing if she just keeps improving. Then I will not be so worried. She loves being in her power chair. She is too funny. She likes driving into the kitchen just to throw stuff away all day!! "Nina I will be right back I need to throw this away." Then off she trots. She is not as naughty and she has been. Maybe because Mom was gone all day. Hmm? Lizzy and I read books, watched Harry Potter and just talked about "Stuff" today. She was in a great mood all day.
Addison K our friend was admitted to UW in Madison today. She is the best hands. DR. Schroth is the best in our eyes. Prayers for Addy
Dr.Schroth called last night to check on Lizzy and she is also not understanding this either with Lizzy. We are getting cultures done to see what is going on. Lizzy told her she was sick and that she has been bad. Yeah..... that is my Lizzy she tells it like it is.
Prayers to all the sick kids !!!!! Spring is how many months away?
Read Journal History
Links: http://www.our-sma-angels.com/elizabeth/ Elizabeth's Page
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