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Elijah's Story

Elijah, my son, was born in 2005 with a good patch of really light blonde hair. Seconds after Elijah was born my doctor said "Oh, where did this blonde hair come from?"  Since my husband and I both have brown hair and eyes, it just seemed a surprise for him to have blonde hair.  

Elijah playingTwo-and-a-half months later I noticed one of his eyes changed to the color brown while the other stayed blue (the color he was born with), and a small brown speck also appeared.  When we took him to the doctors for his next two well checkups we asked about why only one eye changed color; and they proceeded to only ask about how his hearing seemed to be. My husband and I were thinking, “Why are these doctors asking about his hearing when his eye seemed to be the issue?”  They never mentioned that they suspected WS until later.  

Right before he turned 5 months old, I started to add formula to his diet which made him absolutely constipated.  He then was put on laxatives daily to keep him healthy.  Our primary pediatrician mentioned that we should see a geneticist regarding the symptoms that he is having and to see if it is WS.  We took him in and we were told he has WS type 2. We took him in for hearing tests and they came out normal. The geneticist didn't mention that Hirschsprung's can be related to WS and at this time we are having doctors checking to see if that is what is  causing his constipation.  Elijah

His other symptoms of WS that showed up as he got older, besides his two different colored eyes, are that one eyebrow's color is half white, he seems to have a broader or flat nasal root, he has large patches of skin on his face and back that have no pigment, and he has one large patch of blonde hair and little patches of blonde hair within his light brown hair.  Also, his surgeon has mentioned that his muscles on one side of his shoulder blade are forming differently than the other.  

Even with WS he is doing well, hitting every milestone and growing healthy.  He loves his little brother and family; and his family loves him so very much.  We will support him in every setback that he may have that is caused by WS. At this time we will continue to have his hearing checked as needed, have him covered in the sunlight to keep his skin protected, and to continue to work with his constipation issues.  We will also explain WS to Elijah because WS is genetic and he needs to know all about it for the future of his children.

 

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