Noonan Syndrome Awareness

Meet Ezra! #littlestwarriorwednesday

After a perfectly healthy pregnancy with no cause for concern, our second son Ezra was born with unexpected medical complications. Ezra was eventually diagnosed with a rare form of leukemia called juvenile myelomonocytic leukemia (JMML) at 4 months old, and a rare disease called Noonan syndrome at 6 months old. Noonan syndrome is a multi-system disorder that can affect all systems of the body. In his 5 short years, Ezra has survived cancer, chemo, a feeding tube in his belly, eye surgery, and multiple other surgeries and procedures. He also suffers from food allergies and gets sick often, fast and furiously. One way that Noonan syndrome presents itself in Ezra's body is that he is very small in stature. He is 5, but he is closer to the size of a 3-year-old (on a tall day). Despite all he's been through, Ezra is pure, feisty joy wrapped up in a tiny little package. He entertains us everyday reciting movie lines (Lego Batman is his favorite) and being his usual extraordinary self. He is smart, sassy, resilient, and tenacious, and is always keeping us on our toes (he has lots of accidents and bruises, swells, and bleeds easily - we often say that we wish we could wrap him in bubblewrap to keep him safe). It's hard to remember what life was like before Ezra...he has taught our family so much about what is most important. He has turned our definition of "normal" upside down. He has given us our most important roles as advocates for Noonan syndrome (and it's larger group of related conditions called the RASopathies). He has given us new purpose in life to educate others and to help destigmatize rare disease and special medical needs through the lives we lead and the stories we share.


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