A Mother’s love…

“From the day he was born till diagnosis, I always knew there was something wrong with Zain,” remarks his mother, Amy.  “Within those years that we had no answer, there were developmental delays, behavioral difficulties, and many recurring physical symptoms.  Nothing made sense, as there was no condition I knew of associated with these physical and neurological issues.”

It wasn’t until August 2007, when Zain was almost 6 years old, that this puzzling mystery was solved.  The nurses at UVA’s medical center, where Zain was taken for an Autism assessment, diagnosed him with MPS II, a mucopolysaccharide disease also known as Hunter syndrome.

This disorder, which affects only males, is seen in approximately 1 in 100,000 to 150,000 males in the United States.  Children with this disease lack the enzyme iduronate sulfatase, which is essential for cutting up mucopolysaccharides.  Rather than being expelled, the incomplete mucopolysaccharides remain in the body’s cells causing progressive damage.  Symptoms start to appear with time as more and more cells start to become damaged.  These symptoms include: stunted growth, joint stiffness, abdominal hernias, swollen liver and spleen, hypertension, cardiac complications, and airway obstruction.  Because of these debilitating symptoms, typically a boy with MPS II will only live to his mid to late teens.

While receiving treatments for his condition, Zain and his family have been regular guests of the Ronald McDonald House Chapel Hill.  According to Amy, “It would not have been possible to accommodate Zain’s medical needs to the fullest without the help of RMH.”  She went on to say that, “RMH not only allowed Zain to get the treatment he needed, but it also greatly enhanced his quality of life.”   Their fondest memories of the House involve Zain and the House dog, Mabel.  Zain and Mabel formed a special bond while he was staying at the House, and he lovingly calls her “my Mabel.” He looks forward to seeing her again with each visit.

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When Zain was first diagnosed, his mother Amy says that she was shocked and numb.  However, despite the physical and emotional toll that comes with caring for a sick child, she has an attitude of remarkable optimism.  She says, “I am thankful for who my son is, and he has made my life much richer than it ever could have been without him.  So in some ironic way, I have acquired a sense of respect and unexpected appreciation for MPS.  He touches the hearts of so many people and truly beams with an energy that could only come from heaven.”

International MPS Awareness Day

May 15th, 2013

Although Zain’s condition has no cure, research is currently underway to shed more light on MPS II and other mucopolysaccharide diseases.  Beyond discovering new treatments, one of the most important things that can be done is simply to raise awareness about this disease.

To find out more about MPS, please visit the National MPS Society:

www.mpssociety.org

To find out more about Zain Semones, you can visit his personal website:

www.caringbridge.org/visit/zainsemones

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