Rick and Alex's Story

Rick

Alexandra was born in 1997. The first time I saw her, I knew something was different about her. Being her Dad and she my first born, perhaps I was a little more critical or cautious than normal. I noticed that her ears seemed to be cupped more than normal and the bridge of her nose was broader than what I would have expected. I didn’t think she was an ugly baby. She just didn't seem to have the features of a typical newborn. Actually, her button nose added a doll-like quality to her beautiful face. Both the doctor and the nurses suggested that she was fine, but I wasn't convinced. Not that my doctor did a poor or average job, but on the contrary, I totally trusted his judgement and ability. I just had a feeling that something was different.

Once home, Alex began to try to lift her head at a very young age. At the time, it didn't really strike me as unusual until many parents pointed out how strong she was. Later on that month, while she was resting on my chest, Alex began to move her head so that one side was always up. This seemed very peculiar. Demonstrating this to my wife, I placed one of her ears on my chest and immediately, she turned her head so that the other ear was up. On the next visit to the doctor, I explained what had happened and that her nose wasn't typical (rounded and broad at the bridge) and her eyes looked like they were slightly different colors. After taking a closer look, he decided to send us to an audiologist. The audiologist at the hospital explained that he had only ever seen one other child that looked like Alex in his 20 years of practice. He immediately referred Alex to an ophthalmologist where she was diagnosed with Waardenburg Syndrome. After a few more visits to the audiologist, and the genetic specialists, it was determined that she was 97% deaf in one ear, and her WS was a result of a spontaneous mutation. In other words, she was just born that way. The next step in Alex’s care was determining how to care for her. Many people have suggested that we treat her like any other normal child. That is one of the best pieces of advice anyone has ever offered us.

Alex’s unilateral hearing loss presents her with daily challenges. She often has a hard time hearing when there is background noise. Also, when her teacher is not facing her, Alex does not always hear what is being said. Being a person who does not want to bring a lot of attention to herself, Alex will not ask the person or teacher to repeat themselves. This in turn, this has resulted in Alex having a tougher time than normal with some of the subjects in school that she finds challenging. When she first was learning to read, she was unable to acquire the skill as rapidly as others had. She was offered help with some tutoring at school, and as a result she is currently now reading at her grade level. In fact, Alex is spectacular at spelling an often gets 100% on her spelling tests. Another subject that she struggles with is math. Currently she is barely performing at her grade level. We have her enrolled in extra math classes, which seem to be helping. She still has a tough time with problem solving. I cannot say that I attribute her challenges in math to her unilateral hearing loss or her WS, but I am sure that it is a factor. However, she could be taking after me, as I also was slow at learning problem solving with regards to math.

Currently, my wife and I are meeting with specialists within the school system to see what kind of assistance Alex might be eligible for as well as what is available for children with the same challenges that Alex faces. Our goal is to acquire the best support possible in order to provide Alex with the opportunities that will lead her through a successful in life. With a solid support system in place, I think that Alex will do very well. As my wife and I have said on many occasions, “as long as she’s happy, that’s all that counts.

Alex (Age 8)

Q: What is the best part about having WS?

A: The best part is, it is different and there aren’t many people who have it.

Q: What’s different about having WS?

A: You have two different colored eyes, and you may have one or two ears that you can’t hear out of.

Q: Has your hearing loss caused you any challenges?

A: Sometimes when people are talking I can’t hear very well.

Q: How do people treat you?

A: They treat me nice and some people treat me mean.

Q: How do they treat you mean?

A: They make fun of me by pointing out my two different colored eyes. The say that I’m weird.

Q: What do you do when they make fun of you?

A: Sometimes I can’t hear them and sometimes my friends help me out by supporting me.

Q: What do they say when they treat you nice?

A: They support me and they say that I have cool eyes.

Q: Do you have lots of friends?

A: Yes, I’m poplular.

Q: What advice would you give to people who have WS?

A: I would tell them that they are beautiful and that I also have WS. I would tell them that I would like to be their friend. I would also give them lots of support.

Q: What’s your advice on life?

A: Survive, eat well, exercise and make sure to give people lots of love and care.

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