It is with great pleasure that we welcome Katie to The H4H Rare Storytellers Team. Fortunately, our path crossed with Katie's in 2014 when her son, Drew, became one of the first recipients our our Play This Forward Program. We knew from that moment, that we had a special place for Drew in our hearts.

In recognition of Rare Disease Day 2016, Katie joined Harmony 4 Hope Rare Storytellers with a special connection to Lurie Children's Hospital in Chicago.

Katie is a wife to Scott and mother of 2 beautiful boys, Jake (8) and Drew (3). Katie has always been a passionate person by nature so when she learned of her son Drew's diagnosis of Noonan Syndrome it wasn't a surprise that she poured her heart and soul into understanding Noonan Syndrome in its entirety. Katie sits on the board for the Noonan Syndrome Foundation and helps families from all over the world understand their diagnosis and lends an ear to support, educate, and advocate for others. They say that Noonan Syndrome is "The Most Common Rare Syndrome You've Never Heard Of."

Drew was diagnosed with Noonan Syndrome in utero at 19 weeks. At 12 weeks, the ultrasound showed that there was a cystic hygroma and the outcome at the time seemed grim. After extensive testing, 7 weeks later it was found that he had Noonan Syndrome. Drew was born at full term and was born with an ASD and mild pulmonary stenosis. It was found during a routine ECG that Drew was suffering from bilateral plural effusions. He was rushed to Lurie Children's Hospital where he endured a 93 day stay. During that time he went through countless surgeries and was a survivor of ECMO. Today, Drew is a happy and energetic 3 1/2 year old boy who continues to surprise us every day with his resiliency and determination.