Fast cars and football, school and video games. Such is the life of most 12-year-old boys. But this is not the case for Pulaski native Zain Semones. Zain lives with his mother, Amy Kemp, and his sister, Star, and he works his days around medical procedures with the hopes of extending his life and making his days more comfortable.
Zain was diagnosed with an inherited metabolic disorder called mucopolysaccharidosis (MPS II) or Hunter’s Syndrome, in 2008 at the age of five. This disease, which is not seen at birth but becomes apparent later through physical changes and delayed development, appears in children as young as 18 months and is almost always found in males, and is a genetic disorder that affects the X chromosome. Since females have two X chromosomes, if one is affected, the second can make up for the other one.
At the present, there is no cure for Hunter’s Syndrome, only management of the disease’s many complications. Hunter’s Syndrome produces many respiratory issues. Enlarging of the tongue and thickening of the gums, nasal passages and windpipe make breathing difficult. Sleep apnea is common, along with ear, sinus and respiratory infections, and pneumonia. There are also cardiac symptoms, skeletal problems, developmental issues and emotional difficulties to overcome. Already, Zain has had to undergo 17 surgeries in his young life. Currently, the life expectancy for someone with Hunter’s Syndrome is mid to late teens.
But, Zain doesn’t think about these things. Instead, he thinks about his favorite things. At the top of his list is Domino’s Pizza – specifically, Domino’s Pepperoni Pizza. It has been his favorite food for a long time and he eats it often. He loves animals, especially alligators and dinosaurs. And his favorite superhero is the Incredible Hulk.
Zain and his family are trying to attend the 2014 MPS Family Conference in Disney World coming up in December. They have never been able to attend a conference and to be able to be with other families dealing with Hunter’s Syndrome and hearing from leading medical professionals about future treatments would be very beneficial to all of them. While they are there, they would like to be able to take Zain to meet his favorite superhero, The Incredible Hulk, as well as visit GatorLand to see and feed the alligators.
A fund has been set up in hopes of helping Zain achieve his dream, and helping the family attend the conference, at http://www.gofundme.com/a18fxs. For more information on Hunter’s Syndrome, visit www.hunterspatients.com or www.mpssociety.com. For more on Zain’s journey with Hunter’s Syndrome, go to www.caringbridge.org/visit/zainsemones.