We have an excellent night planned to help Stephanie–a 13-year old diagnosed with AVM. Below is a letter from Stephanie–check it out and then come to Holland and show your support on Friday!

Hi my name is Stephanie Denise Allaback. I am 13 years old. I was born April 20th, 1994. I was born with a rare birth defect called Arterio-Venous Malformation (AVM). When I was 3 years old, I had surgery performed on my gums because my teeth weren’t coming through on their own. That’s when my mom noticed the swelling in the right side of my face. This included my forehead, eyelid, cheek, and upper lip. We visited several Doctors in the Reno, Sparks, and Carson Valley areas. No one was able to help me. They were just calling it cystic hygroma or lymphangioma, and stated that it should eventually go away. It was something that I still wanted to have fixed somehow.

One of our family friends saw a program on TV, which showed children with different types of malformations. These children were getting treated at the Arkansas Children’s Hospital in Little Rock. My mom was so excited she sent several emails trying to get in touch with the doctors in Little Rock. After 8 years of seeing many doctors that couldn’t identify exactly what was going on with me, we finally had an appointment for a consultation in Little Rock in April 2006. Upon completion of an MRI & MRA they discovered that what I had was AVM. AVM is a very rare malformation that happens to be vascular and, if not taken care of, will damage the nerves in my face, discolor the skin, and eventually start disintegrating my face. In June 2006, my mom and I headed back to Little Rock for surgery. The first day they did a 4 hour procedure called immobilization, to highlight the areas they would be working on the very next day. I was told the surgery could take anywhere from 10-20 hours, depending on how the immobilization worked. My surgery was conducted on June 30th 2006. My mom and I were there for a total of three weeks. I left with a scar right behind my hairline, starting in the middle of my head and running all the way down around my ear and half way down my neck. After thinking this would just go away and someday I would just have cosmetic surgery done to fix the problem, I felt grateful to have my issue diagnosed and relieved to know that this surgery would make me look normal. It was scary to think if I didn’t have it done it would have damage my face permanently.

Unfortunately, almost a year later, my issue has resurfaced. The Doctors had told me I would see major results by now. At the request of the doctors in Little Rock, I had another MRI & MRA done. After the doctors reviewed my results, they now want me to return for another surgery June 15th.

To give you an idea of the cost, my surgery last year cost over $75,000. Our goal this year is to try to raise $7,500 to cover the out of pocket expenses. I appreciate any support you can offer to help us in our time of need.

Thanking you in advance for all your help and concern,

Stephanie Allaback