Hi,
We had our appt at Shriners Hospital yesterday. We have avoided surgery for now! We will go back again in 6 months and they will see him again. X-rays look normal so that is good. We are going to be given a hip band that attaches to his braces to help stabalize and keep his hips and legs straight.
All good news. The hospital and staff was wonderful.
As for me, my muscle biopsy has been pushed back to Oct. 9. I am scared but if my baby got through it than so can I. I hope it gives us some answers wether good or bad. Dr. Li and Dr. Mackin, my neurosurgeon and neurologist, will then be referring me to see an adult mito specialist in NY.
Please remember this is National Mitochondrial Disease week. Please wear Green this week in honor of those who suffer from this invisible disease and check out http://www.umdf.org/ to learn more about Mito.
On Wednesday, September 23rd, at 10:00 a.m. internationally, families and friends are encouraged to "Light a Light for Mito” in honor of all who are afflicted by Mito and in memory of the babies, children and adults who have lost their battle with mitochondrial disease.
Facts about Mito:
• Every 15 minutes a child is born that will develop mitochondrial disease by age 10.
• It is estimated that of the 4 million children born each year in the United States, up to 4000 develop mitochondrial diseases.
• At least 1 in 200 individuals in the general public have a mitochondrial DNA mutation that may lead to disease.
• There are over 40 identified types of Mitochondrial Diseases and believed to be over 100 variants of mitochondrial diseases.
• In the United States, more than 50 million adults suffer from diseases in which mitochondrial dysfunction is involved. Mitochondrial dysfunction is found in diseases as diverse as cancer, infertility, diabetes, heart diseases, blindness, deafness, kidney disease, liver disease, stroke, migraine, and the toxicity of HIV and other drugs. Mitochondrial dysfunction is also involved in aging and neurodegenerative diseases such as Parkinson and Alzheimer dementia.
• The World Health Organization (WHO) calculates that neurodegenerative diseases, also associated with mitochondrial dysfunction, will become the world's second leading cause of death by the year 2040.
All good news. The hospital and staff was wonderful.
As for me, my muscle biopsy has been pushed back to Oct. 9. I am scared but if my baby got through it than so can I. I hope it gives us some answers wether good or bad. Dr. Li and Dr. Mackin, my neurosurgeon and neurologist, will then be referring me to see an adult mito specialist in NY.
Please remember this is National Mitochondrial Disease week. Please wear Green this week in honor of those who suffer from this invisible disease and check out http://www.umdf.org/ to learn more about Mito.
On Wednesday, September 23rd, at 10:00 a.m. internationally, families and friends are encouraged to "Light a Light for Mito” in honor of all who are afflicted by Mito and in memory of the babies, children and adults who have lost their battle with mitochondrial disease.
Facts about Mito:
• Every 15 minutes a child is born that will develop mitochondrial disease by age 10.
• It is estimated that of the 4 million children born each year in the United States, up to 4000 develop mitochondrial diseases.
• At least 1 in 200 individuals in the general public have a mitochondrial DNA mutation that may lead to disease.
• There are over 40 identified types of Mitochondrial Diseases and believed to be over 100 variants of mitochondrial diseases.
• In the United States, more than 50 million adults suffer from diseases in which mitochondrial dysfunction is involved. Mitochondrial dysfunction is found in diseases as diverse as cancer, infertility, diabetes, heart diseases, blindness, deafness, kidney disease, liver disease, stroke, migraine, and the toxicity of HIV and other drugs. Mitochondrial dysfunction is also involved in aging and neurodegenerative diseases such as Parkinson and Alzheimer dementia.
• The World Health Organization (WHO) calculates that neurodegenerative diseases, also associated with mitochondrial dysfunction, will become the world's second leading cause of death by the year 2040.
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