Hello! This is Harlie Armide Varner,
born May 1, 2007 in Lake Charles, Louisiana.
She weighed a meager 5 pounds, 5 ounces and was 18 inches
long. Harlie is about 7 months in this picture, and
now weighs about 16 pounds.
When Harlie was born, her pediatrician told me (her mother, Tracy Guidry) that she looked syndromatic, and he thought she had Downs. He also said she had a heart murmur, but that it would probably go away. A few days later he said the murmur had gone away, and that everything was okay. However, she was a very noisy breather. She would wheeze and squeak with every breath, even in rest. I asked her pediatrician why several times. He said I shouldn't worry unless her chest and face are completely blue. I thought that a little odd, and went to a different doctor. Harlie was 2 months old.
At this appointment, the new doctor informed me that her murmur was still there, and he was very worried. He got on the phone with a pediatric cardiologist and sent us over immediately. There we learned that Harlie had a condition very similar to pulmonary stenosis and wanted her put on oxygen (which we still use on her from time to time) and he told me he was 99% sure that she had Williams. As a first time, not to mention single, young mother, I was very concerned. I cried the whole way home. I had no clue what Williams was. I looked up information on the internet once I got home and was very relieved at what I found. At about three months old, Harlie was officially diagnosed with Williams Syndrome through PHISH testing. From there she went to several doctors and has been enrolled an early steps, a program for special needs children.
Harlie is now 8 months old (January 2008) and is thriving in my opinion! We still she her cardiologist every 3 months, and a pediatric orthopedist about every 3 months, as her feet were severely turned outward at birth. In her first evaluation with Early Steps they had a few concerns, but it was still early to see things. At her 6 month evaluation the lady that came out to check on Harlie was very surprised at her strength and the things she was doing at her age. She still doesn't make many sounds, but she is really doing very well in every other aspect! She tries to crawl, but can't get her hands to move! She is very happy for the most part, and absolutely loves to cuddle! She loves to try to feed herself, especially chocolate pie! She is a clown -- a very funny little baby! She has amazing strength and looking at her and what she came from is truly an inspiration to me!
You see, since Harlie was 2 months old (the day we got all this news), her father and I have been apart. She doesn't see him often, and he doesn't help us very much at all. Harlie and I live with my parents as of now, and it is so wonderful. Harlie is smothered with love and affection! We have been surrounded with people that have nothing they wouldn't give for us -- friends and family alike. Harlie has had people all around the world praying for her, and we know this is why she has come so far. She has been healed thanks to the answered prayers from all of our friends, family, and strangers who find out about her condition.
If anyone would like to contact us, please don't hesitate! I know how badly I want to speak with other WS parents and children! You can email me, Tracy Guidry, at nannyb1963@aol.com. We would love to hear from anyone!
