Team Triathlon

Dear Friends:

I’m on a mission to help make a difference in my niece’s life! This is my 5 year old niece Chloe Cooke and on July 19, 2008 I am participating in a Team Triathlon event in Indianapolis to raise money toward research of a disease called Chiari Malformation.

Chiari Malformation is when the cerebellum herniates into the spinal canal. The herniated tissue blocks the circulation of cerebrospinal fluid in the brain and can lead to the formation of a cavity within the spinal cord. Patients of Chiari suffer from the following symptoms: severe headaches and neck pain, dizziness, vertigo, disequilibrium, visual disturbances, ringing in the ears, difficulty in swallowing, palpitations, sleep apnea, muscle weakness, impaired fine motor skills, chronic fatigue, and painful tingling of hands and feet.

Chloe suffers from many of these symptoms as well as seizures, and was diagnosed with Chiari on her 2 year old birthday. Chloe’s symptoms progressed and in March of 2006 she underwent decompression surgery. The surgery is not a cure for Chiari, but to help relieve some of the symptoms. Chloe has had some relief from the surgery, but still has headaches, neck pain, visual disturbances, fatigue, tingling in hands and feet, and seizures. There are estimates that 200,000 to 2 million people suffer from Chiari. Many of these people go undiagnosed or misdiagnosed. More research is needed to understand the condition, diagnose it and support the families. Chloe is such a happy and easy going little girl despite the pain that she suffers from every day. She is inspiration to all that she meets and has definitely inspired me to help her and others suffering from this condition raise money to find a cure.

To help me in my mission to raise awareness, increase research, and advocate for more support for those who have Chiari, please consider donating to NORD, the National Organization for Rare Disorders by logging onto http://www.rarediseases.org/, click “Donate Now” and make a donation in honor of Chloe Cooke; or mail you donation to NORD, 55 Kenosia Avenue, P.O. Box 1968, Danbury, CT 06813-1968. Please note “in honor of Chloe Cooke.” Please use the following address, Chris Stephens, 8502 Legacy Court, Fishers, IN 46038, if you would like for us to be notified of your donation.

Chloe and I thank you for your support!