Just a few weeks ago, I was contacted on Facebook about a girl in Maryland named Molly who has a rare brain disease called Chiari Malformation. Even after undergoing brain surgery, her symptoms have gotten worse.
Unfortunately, she is unable to attend school or play sports. At just 17 years-old, she is in constant pain and spends most of her time in bed.
Personal stories on becoming a member of Kelly's Dream
The reason I came to be part of the Chiari group is a heartbreaking one, but it is also the one place where I can obtain some consolation and lots and lots of advice and support.
We live in Christchurch New Zealand.
My 21 year old son was a fit and healthy soldier, doing extremely well in the NZDF; he had served in Tonga and East Timour and was getting ready to go to Afghanistan. (He was always sick as a child with respiratory problems, etc but he never let anything get him down, he was a top rugby and cricket player and a talented swimmer) He started experiencing extreme headaches, blurred vision and vertigo which increased with physical exertion
Arnold-Chiari Malformation is a condition in which the cerebellum portion of the brain protrudes into the spinal canal. It may or may not be apparent at birth. Arnold-Chiari I type malformation usually causes symptoms in young adults and is often associated with Syringomyelia, in which a tubular cavity develops within the spinal cord.