January 31st, 2009 --     

Angie Bowers is a Chiari Mom who is putting her many talents to use in the battle against Chiari.  In March, she will be competing in the 2009 West Virginia International Pageant in the Mrs. division.   Because of her son, she chose Chiari as her platform and is off and running in her battle to Conquer Chiari.  We asked Angie to tell us more about her and her efforts....

Angie Bowers, Chiari Mom & Advocate

What is your connection to Chiari?
My connection to Chiari started in January of 2004 when my son was diagnosed with the condition one month shy of his 2nd birthday.

How does Chiari affect your son and how did you find out he has Chiari?
Today, Matthew is a very active, healthy 6 year old but almost 5 years ago his future looked very grim. Although he is not able to participate in contact sports or anything that would put him in danger of head or neck injuries, Matthew leads a pretty typical life for a boy his age.

Matthew was about 12 months old when he started exhibiting symptoms of the condition. At first the symptoms seemed to come on slowly and so there was never a thought that what he would go through in the next 12 months would lead us to discovering a life threatening condition. Matthew has a twin sister so they tended to be at the same stages of development. At 12 months, Matthew was walking steadily and of course attempting to even run but I noticed that as the days went by Matthew was having balance problems, he seemed clumsy. Running became more of a challenge where he would only take a few steps and then fall. Another symptom Matthew had was apparent problems drinking and eating. His throat would make a gurgling sound when drinking and he would often throw up soon after drinking or eating anything. He became more irritable and starting beating his head against his bedroom wall at night. He starting running fever and was seen by his pediatrician. The diagnosis for the fever and vomiting was always a cold or pneumonia. Matthew continued to get worse in every symptom and was losing weight drastically. I even switched pediatricians thinking this might be the reason we got no where but to no avail. After almost a year of frustration in watching my son's health deteriorate before my eyes, I went to the ER at the children's hospital in San Antonio and told them to find us a room, we are staying until someone tells me what is wrong with my son. After 4 weeks of every type of test and screening known to man they finally did a swallow study and found that Matthew's epiglottis was not working properly therefore any food or drink he would ingest was going into his lungs, not his stomach. They immediately knew then that something was seriously wrong. They suspected a tumor but would not know for sure until after they performed an MRI. I was actually taking a break from the hospital when I got the call from one of the doctors assigned to Matthew's case. She told me to pull the car over and listen. Matthew had a serious condition that was affecting his neurological system and surgery was our only option. This was the worst condition of Chiari that the neurosurgeon had witnessed as his cerebellar tonsils extended to vertebrae #5. Matthew was immediately taken off of oral feeding and we started administering his meals by TPN. We brought him home and I stayed home with him until his surgery in late January 2004. Matthew had decompression surgery and was in a drug induced coma in the PICU at Santa Rosa Children's Hospital in San Antonio for 6 days. We were told that there was little chance that he would ever eat orally again due to the severity of the Chiari and the nerve damage. On the 7th day, they woke him up and allowed me to feed him pudding. He ate just like a healthy 2 year old would normally, finishing every drop of his chocolate pudding with no issues! At that moment I knew that we had been doubly blessed, for he came through surgery well and what a wonderful surprise for him to be able to eat again!

What did you think when you first found out about Chiari?
At first, I had to understand what Chiari actually was, what did this all mean? I thought how could this happen to my child, to Matthew, who had already had complications at birth due to being 6 weeks premature. I honestly thought that since we had made it through his earlier challenges, that was his lifetime allotment! I really turned to God in prayer (lots of prayer) asking for help, asking for Matthew's health and for strength to get through all that was to come.

How has it affected your family?
Chiari has affected our family in many ways. For Matthew, he does ask why God made him this way and also gets discouraged when he cannot participate in certain activities due to his condition. But at the same time, he is happy to tell you about his "bruise" on the back of his neck. We know that today, Matthew is doing well but I always have it in the back of my mind that we don't know what tomorrow will bring. Having a child with a neurological condition such as Chiari and having been blessed to have him come through surgery, it really makes me appreciate the time we do have with him and all of our family. I am very interested in speaking with other parents who have been affected by this condition. My family is encouraged by Matthew's progress and we want to help others with this condition through correspondence, education and fund raising for research. I also feel very strongly about telling everyone I come in contact with about Matthew's condition, the symptoms he exhibited and that sometimes you have to push the medical professionals you deal with to look further. Education of the medical profession on this condition is crucial.

How is your son doing now?
Matthew goes for regular checkups and is doing great! He is active in sports and excels in school. Matthew has struggled a bit with his behavior and we work through the school guidance counselor to help Matthew deal with his anger and frustrations. Through my own research, I have found that others with this condition have reported experiencing anger and issues with defiance. I am looking further into this as we help Matthew to mature as a developing young man.

Did you know right away you wanted to get involved?
I knew after Matthew was diagnosed with this condition I wanted to get involved however it was very hard to find an avenue to do so. I have talked to others for several years now about the condition and made connections where I could however Chiari is not a familiar subject to the general public. Once I found this organization and saw their mission I knew this is where I wanted to focus my efforts to further education and research for those living with Chiari and for those who will be diagnosed in the future.

What and when is the pageant you will be competing in?
The 2009 West Virginia International Pageant will be held in Charleston, West Virginia on Saturday, March 21st. I will compete in the Mrs. division. I feel that as a married woman, professional and mother my perspectives, intent and objectives are so clear. I feel very strongly about potentially having a state and national "stage" on which to promote this cause, it is really the opportunity of a lifetime.

The reason I chose this pageant system is due to their mission which is "showcasing the accomplishments of today's married woman". The women competing in this pageant are wives and mothers, they are active members of society who are all striving to make a difference in one way or another through their chosen platform.

Have you competed in pageants before?
I competed several years ago in my teen years where we had platforms or causes that we donated our time and efforts to however competing for me now is taking on a whole new meaning.

What does it mean for Chiari to be your platform?
You know, I could talk for hours about this condition and how it has changed my life and the lives of so many. I believe in so many things, good things, but for Chiari to be the one subject I get to speak to people about, well, this is my opportunity to further the cause, share the blessings my family has been given and make a difference in lives of others. It does feel odd sometimes to talk about educating the medical profession on this condition however I know as a professional myself, I will never stop learning the tools of my trade and so my personal experience can certainly be used as a vehicle to further the knowledge base of others.  Regardless of whether I am successful in winning the title, this is a platform for life for me and my family.

How are the contestants scored/judged?
For the Mrs division, I will compete in a One on One Interview with 5 judges which will account for 50% of my score. In the interview, I will be asked about my platform in detail. I will also compete on stage in fitness wear and evening gown, each accounting for 25% of my score. I am excited about all events as I feel it is a way to show all sides of yourself, promoting a well rounded or balanced life. Interview has always been my favorite phase of competition though!

What happens if you win the pageant?
If I am successful and am crowned Mrs. West Virginia International 2009 I will have the great honor of a year long reign where I will take advantage of this title to tour the state and neighboring states to speak on my platform. I will target the professional medical communities for education and research as well as the general public for awareness. I will also have the opportunity to compete for the title of Mrs. International 2009 in Chicago in July of this year. At this event, the other state title holders will compete in the same events for the chance to promote their platform on a national level.

Outside of the pageant, what else are you doing to promote Chiari awareness?
My son and I are working with his elementary school to begin a fundraiser which will also allow us to speak on the condition for education and awareness. I am visiting with medical professionals in my community about this condition. I am currently speaking with some of the national retail/restaurant chains regarding possible rund raising opportunities for the cause. I am also looking forward to the pediatric fundraising event in the fall.
 

Return To Table Of Contents