14 year old girl needs to get to Mayo
My name is Teressa and my 14 year old daughter is Sara. A little over 4 years ago Sara became very sick with a bleeding disorder. She was in ICU fighting for her life. Many prayers and an amazing God got her through that, however, during that time her autonomic nervous system started to fail.
Her bleeding disorder is severe and has no cure. But we do have it as managed as possible at the moment. She had to quit playing sports and participating in activities that might cause a bleed.
The dysfunction of her autonomic nervous system, called Dysuatonomia (also often times referred to as POTS), has turned her world upside down. The autonomic nervous system controls all the things in your body that you don't think about, breathing, digestion, circulation, body temperature, etc. These things no longer work for Sara. It has progressively gotten worse over the past 4 years. Sara is not able to attend school, is mostly bed ridden, is unable to digest food, making a liquid diet mandatory, she uses a wheel chair for mobility for moderate to long distances, it has caused cognitive issues that have affected learning. Her quality of life is very low. However, if you know Sara, she is always smiling. She has accepted this challenge in her life and is determined to make the best of it and use her situation to glorify God.
In November 2012 we spent the month at the Mayo clinic in Rochester, MN trying to see if there is anything we can do to help her. There is no cure for dysautonomia, although doctors at Mayo reassured her they are working on a cure and hopeful that someday they will have some answers. In the meantime, they have developed a program call Pediatric Pain Rehabilitation Clinic. It is designed to teach these kids how to improve their quality of life and facilitate a return to regular daily activities.
You can learn more about the treatment program at
http://www.mayoclinic.org/pain-rehabilitation-center-rst/pediatricprogram.html
You can learn more about Dysautonomia at
http://www.dysautonomiainternational.org/
You can learn more about Sara and our family
http://www.facebook.com/prayersforsarawright?ref=ts&fref=ts
Our goals for Sara after the program at Mayo are that she can walk without her wheelchair, got to school at least half a day, begin to sing again (both in plays and on the church worship team), be able to hang out with friends more and enjoy her teenage years.
Up until 2 days ago our insurance was refusing to pay for the program. Then we got a call that there was a verbal approval. So now we are panicked to raise the money we need for travel expenses, living expenses and the insurance deductible. We live 2000 miles from the Mayo Clinic. We are scheduled to leave on February 23rd. February 25th through March 1st she will be continuing with appts from the past trip and also participating in an anxiety clinic. (Anxiety is another symptom of Dysuatonomia. The autonomic nervous system controls the fight or flight response.) The Pain Rehabilitation Clinic begins on March 4th and we expect to return around the first of April. The program is M - F from 8 - 5.
The Pain Rehabilitation Clinic has a success rate of 72% in their adolescent patients. I realize that $12,000 is a lot ask for, but if their is a 72% chance that my daughter can have a better quality of life, I am willing to ask for help to give her the opportunity to try.
Our family appreciates any help you are able to offer.
Charles, Teressa, Zach and Sara
