Time & Attendance
By Jon Hyman
Mar. 28, 2016
This is Donovan.
He’s 7 years old. And he has Noonan syndrome. Noonan syndrome is a genetic disorder caused by one of several genetic mutations. Donovan’s is of the PTPN11 gene. It is a multisystem disorder with an estimated prevalence of 1 in 1,000 to 2,500 births. In Donovan’s case, he has a bleeding (platelet function) disorder, a congenital heart defect (pulmonary valve stenosis), feeding and gastrointestinal issues (Celiac disease), ptosis of his right eye, small stature (for which he takes daily injections of growth hormones), and low-set ears.
By all accounts, he’s a pretty confident kid. He’s smart, funny, comfortable in groups of all ages, and overly sweet and affectionate.
And, while he’s conscious of his differences, he’s never let them get him down. He embraces his daily growth-hormone injections because he knows they are helping him grow. He loves his glasses because everyone tells him how cool they look. He’s always quick with a Donovan-ism to break up a room. And he doesn’t mind his current toothless state, because missing teeth brings the Tooth Fairy, who brings money and future Lego Dimensions purchases.
That is, he never let them get him down until last week.
At school, a fourth grader made fun of his ears. And it really bothered him. It’s the first time I’ve seen him down in the dumps about who he is, or, more accurately, what it is about his syndrome that sets him apart.
As a parent, I had three reactions. In order:
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