Secretary
Hi, I'm Barbara Rowe, Joey's Mother.I have been married to my husband, Billy Rowe, for 41 years.We have three children, Missy, Joey, and Becky. I was born and raised in Maryland for 40 years. We moved to Salyersville, Kentucky in 1991. We live on a farm and raise horses.
In 2001 my whole world was turned upside down. Joey discovered that he had Arnold Chiari Malformation. Joey had many health problems as a child, but of course. was never diagnosed .As he got older, he would have terrible headaches. We would take him to the ER,but the doctors would never take tests. They would just give him medication and send us home. Sometimes, but not very often, the medications would work. As a mother, it was so frustrating seeing your child suffer and not knowing what to do for him. Joey's legs would also hurt a lot.We took him to several specialists, but again, no one could give us an answer to why Joey was hurting so much. In his early 20's, Joey saw a neurologist and to our disbelief he told us what Joey had, but would not explain what it was. The doctor stated that if one day, Joey got out of bed and could not walk, come back and see him. Our journey was just beginning. He then saw an internist that studied his MRI and discovered he had Chiari. She didn't know much about it. Joey did his own research and found a specialist in New York. From there, it is history read Joey's Bio.
Then in 2015 our oldest daughter, Missy, discovered that she too had Chiari. We couldn't find a neurologist in Kentucky that had any knowledge about Chiari. They had heard of it, but knew very little about the disease, and as usual had no desire to learn about it. In July 2015, we went to New York and Missy had surgery on the 15th and Joey on the 16th. What a nightmare. Both Joey and Missy still have symptoms, but not quite as bad as they were.
We need to raise money for Chiari Fund, to help those suffering with Chiari that are in desperate need of help.If there is anyone of you, that would like to help raise money for the Chiari Fund, PLEASE contact us. We could really use your help.
President and Founder
Billy "Joey" Rowe
Hello..I am married with 2 kids, a 10 year old girl and a 13 year old boy. I am originally from Maryland but now live in Charlotte, NC. After being a sickly child I did not find out that had anything wrong with me until my family doctor found Chiari in 2001. They found, after multiple visits that I had Chiari and Tethered Cord Syndrome .I was decompressed in October 2005 and had Tethered Cord Syndrome surgery in August of 2006.
My surgeon and his team tried everything other than surgery to alleviate my symptoms. However, there efforts were not successful. I then became I candidate for surgery. After being decompressed a lot of my symptoms went away other than headaches that are a lot fewer than before surgery, balance, and mostly leg pain. I then went back and they found I had Tethered Cord. That surgery was preformed but had no relief of my leg pain. However, I can tell that things have stabilized and are not getting out of control as they were before. I, as well as 3 different doctors feel that the tethered cord surgery has stabilized me to where I can at least walk, even with the pain, can urinate even if I still have some problems, as well as helped stop the damage that was being done by the cord being pulled on. Even with the decompression, it took away only a few symptoms, some got a little better, and some stayed the same. However, before I had the surgery I was going down hill very fast and was almost in a wheelchair. So, I am so glad that I had the surgery done when I did as I think I would be in much, much worse shape than I am now.
In July 2015, I had a cervical fusion to further alleviate symptom associated with Craniocervical Instability. It has helped somewhat but I still have numerous problems that will never go away. So, running Chiari Fund can be hard at times. I do have the ability to do what I can and when I can so that helps me do my job better. The vision of the organization came from my own experiences with having Chiari and Related Disorders. I have seen first-hand how many people need help in obtaining the appropriate care they deserve. Money should never be an obstacle for anyone to receive the best care and see the best doctor to take care of their condition. I saw this as a void in the community and thereby Chiari Fund was born.