A few editions of our Star newsletter previously, we received an article about Trey Purcell and Hunter Syndrome, also known as Mucopolysaccharidosis II (MPS II). There are many articles in the Star and I often fail to remember everything that we publish, but this particular article was very touching. Hunter Syndrome is a very rare developmental disability and is described by Wikipedia below:
Physical manifestations for some people with Hunter syndrome include distinct facial features, a large head, and an enlarged abdomen. People with Hunter syndrome may also experience hearing loss, thickening of the heart valves leading to a decline in cardiac function, obstructive airway disease, sleep apnea, and enlargement of the liver and spleen. Range of motion and mobility may also be affected. In some cases of Hunter syndrome, central nervous system involvement leads to developmental delays and nervous system problems. Not all people with Hunter syndrome are affected by the disease in exactly the same way, and the rate of symptom progression varies widely. However, Hunter syndrome is always severe, progressive, and life-limiting.
The article goes into detail on how the Purcell family overcame the hardships of raising their son with Hunter Syndrome and the challenges they still face today. I would like to dedicate this blog post to the Purcell family and for all the support they’ve also given to the DDA. There’s more information on their website, and even more information on our online Star Newsletter.