If Jaden could write a blog post, I think she would have this to say today:
My name is Jaden Lee Richards and I am six years old. I have a mitochondrial disorder, but the specific type cannot yet be identified. Because of my severe low muscle tone I cannot sit up, walk or talk. But I am a happy little girl who loves to laugh and cuddle. A few of my favorite things are books, music, school, and any type of dessert with whipped cream!
Today we near the end of Mitochondrial Disease Awareness Week. I hope you remembered to wear green today! Did you know that researchers estimate that one in 4,000 children will develop a mitochondrial disease related to inherited mutation by the age of 10? There are 40 specifically indentified mitochondrial diseases, but the vast majority of them have not yet been identified.
In the USA, more than 50 million adults suffer from diseases in which mitochondrial dysfunction is involved. Some cases are more prevalent, while others — like mine — are rare. 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. It is even 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.
There are no cures or specific treatments for any of the identified mitochondrial diseases. There isn’t even a reliable and consistent means of diagnosing it. But currently there is a bill pending in the U.S. Congress, H.R. Bill 3502, establishing an Office of Mitochondrial Medicine at the National Institutes of Health. The newly created office will be directed to improve the coordination of research related to mitochondrial medicine within the institutes at the NIH and with outside researchers.
Please take a few moments today to learn about mitochondrial disease. You can show your support by writing a letter asking your Congressman to Co-Sponsor H.R 3502. Click here to create a personalized a letter. If you don’t have time to write the personalized paragraph at the end of the letter, you can use this one:
- A little girl named Jaden Lee Richards touched my heart. She is six years old and has a mitochondrial disorder. It is so rare, however, that the specific type cannot yet be identified. Because of her severe low muscle tone she cannot sit up, walk or talk. But she is a happy little girl who brings a lot of love to the world. She shows some improvement with physical and occupational therapies, but more research is needed to diagnose her disorder.
Thank you for your time. New research will benefit kids like me AND adults like you — you may just not know it yet.
Sincerely,
Jaden
