One of the most adorable children I had the pleasure of working with at the swim school, Otto*, had a rare genetic disorder called Williams Syndrome. By spending time with him, the average person would never be able to tell that anything is “wrong” or “abnormal” about him. However, his syndrome has physical and serious health implications.
Williams Syndrome affects 1 in 10,000 people worldwide and around only 20,000 people in the United States. As I mentioned earlier, it is a rare genetic condition that is present at birth and occurs equally in males and females. The disease can affect various aspects of the child’s health; it puts them at a high risk for development of cardiovascular disease, delays in development, and learning disabilities. Many children need interventional medicine such as occupational therapy that typically isn’t covered by insurance – the disease is typically extremely costly for the family, so families are encouraged to apply for as much funding as they can from nonprofit organizations to help with the array of health costs. As children with Williams Syndrome become older, they typically struggle with basic aspects of life like special relations, numbers and counting, and abstract thought. This tends to make daily life a struggle, and they often cannot live alone.
The most notable characteristic of children with Williams Syndrome is their temperament; every single one is extremely outgoing, kind, and warm. Parents across the board agree that their child has brought more joy into their life than they could even explain just from their everyday temperament. I completely understand this concept – as soon as Otto would walk into camp or lessons at the school, the entire atmosphere of the room seemed to change. Always displaying a huge smile from ear to ear, laughing at the simplest things, Otto truly brought joy into every one of our staff’s lives. Many disorders such as autism can often make it difficult for children to connect with others, specifically their parents or caregivers. However, these children are able to almost immediately connect with not only their caregiver, but whoever else they may come in contact with.
This ability presents the only caveat to this wonderful temperament: it can often place the children in dangerous situations. It is easy for predators and other people with the wrong intentions to become instantaneously trusted by the child. Though the children would likely never be able to live alone due to health obstacles alone, their innate desire to trust everyone they meet necessitates a constant caregiver throughout their entire life.
In Otto’s case, health implications were rampant during his first few years of life. He has had multiple heart surgeries due to improper development of his heart chambers due to the syndrome. He has to take multiple medications each day to continue to ensure the healthy function of his heart and proper development of other organs in his body. Yet despite these challenges, his spirit and attitude remain positive at all times. Not only is he friendly to nearly everyone he meets, but he also refers to the scars on his chest from surgery as souvenirs. He may never be able to live independently due to his various health issues and too-friendly social temperament, but he will certainly lead a fulfilling life during which he will touch nearly everyone in his path.
On the outside, these children just look like typical children with a few defining facial characteristics (a small, upturned nose, a wide mouth, full lips, and puffiness surrounding their eyes). But in reality, these children like Otto are amazing individuals who fight for their lives from practically birth and will never utter one negative word about any sort of medical issue or problem, regardless of how old they become. They will often touch others’ lives not only through their broad spectrum of positive emotion but also through their typical affinity for music and possession of highly developed musical abilities.
For more information, visit: http://www.williams-syndrome.org/what-is-williams-syndrome.
*Name changed for privacy reasons.
Pictures:
http://i.i.com.com/cnwk.1d/i/tim/2011/10/26/Ben2_620x350.jpg
http://news.yale.edu/sites/default/files/ydb-images/7015-94328118.jpg