Leah Marie Powell was born April 22, 2002. She weighed 5lbs. 5oz. She was small and adorable. She is my special little angel! At birth the doctors heard a slight heart murmur. Everything seemed fine and we went home and we had a follow-up appointment with her cardiologist in a month.

We went to the appointment and they did an ultrasound of her heart and an ECHO. They said that they wanted to have a catheter done to balloon open the valve. When they did that they found out that the arteries above were too small so they couldn't do the procedure. After the catheter she didn't wake up. They used reverse sedation drugs to help her wake up but after they did that she stopped breathing. She was rushed to ICU where she spent the next two weeks there. She was on a breathing machine and a feeding tube. They had her hooked up to a few different machines. They ran all kinds of tests and come up with nothing for which seemed like forever! She finally woke up after about 6 days. Slowly but surely she became back to herself. There was still no answer to what went on and what was wrong. It felt like they did every test possible and twice if they had too. Finally they did that teat called the FISH test. They told me what it was about and what they knew about William Syndrome. They had never seen a case and I had never even heard about it until then. The test came back positive, she had Williams Syndrome. I was shocked, it was hard but we got though it. I did a lot of researching about Williams Syndrome.

Since then she has had another catheter but it was only to take pictures to see if she needed to have open heart surgery. She didn't need it then and now we are still watching it. We go to the cardiologist every 3-6 months. She goes to early intervention classes because she is a little behind in all her skills, some more than others! She sat up at 7 months, she crawled at 11 months and now at 16 months she stand up on her own (for a few minutes) she doesn't walk on her own yet but she walks the furniture and tries to walk by herself. She doesn't eat very well. Her primary food is still her bottle (with formula in it). She will eat some solid foods like pastas, hot dogs, cookies, ice cream, and mac & cheese. She eats the junk food better than the good for her food. Some days she will eat well and then some days she won't. I get a little worried but I know it will change when she's ready.

She gets a lot of attention from her great-grandparents, her Papa, and her mother of course. Sometimes she doesn't get to see me that much because I'm a single mother and I work full-time and over-time to support us. Sometimes it makes me feel bad but I know that I have to do it for her. Also she spends the time that I'm at work with her great-grandparents so it's not that bad. She is a very bright little girl. She lights up every room with her bright eyes and beautiful smile. She gets attention wherever we go. My daughter brightens my day everyday and keeps me going when things get tough. She has her moments when she's a little stinker but not that often. She is my life and I can't imagine it without her!

I would like to talk with other parents of children with Williams Syndrome for any comments or advice. You can e-mail me at LiTAng7790@aol.com.

Melissa Powell, Leah's mother.