MEET EZRA

Our second son Ezra was born on April 20, 2013. He has a longer medical history than many of us will have our entire lives. He was diagnosed with Juvenile Myelomonocytic Leukemia (JMML) on 08/23/13 and Noonan Syndrome (PTPN11) on 10/14/13.

Many of you have expressed your desire to contribute to Ezra's ongoing medical expenses and we are incredibly grateful and humbled by your generosity! In lieu of donating directly to our family, we encourage you to donate to either of these organizations who are leading the way in helping children like Ezra who have Noonan Syndrome:

    Ezra's Story:

    05/20/13 - One Month Old

    06/09/13 - The Beginning

    06/09/13 - Weeks 0-6

    06/12/13 - 2nd Hospital Stay

    06/19/13 - MORE tests, more waiting

    06/20/13 - Two Months Old

    07/01/13 - Waiting Game

    07/15/13 - Rough Week

    07/20/13 - Three Months Old

    07/26/13 - GI Follow-up

    08/20/13 - Four Months Old

    08/23/13 - A Diagnosis 

    09/01/13 - Quick Update

    09/08/13 - At Home Chemo & Searching For a Match

    09/15/13 - Frustrations & Sunshine

    09/20/13 - Five Months Old

    09/22/13 - G-tube

    09/23/13 - The PTPN11 Factor 

    10/06/13 - Weekly Update

    10/14/13 - Reflecting on Six Months

    10/14/13 - A Diagnosis - Part 2

    10/20/13 - Six Months Old

    10/28/13 - Weekly Update

    11/05/13 - "Normal"

    11/17/13 - Feast or Famine

    11/20/13 - Seven Months Old

    12/05/13 - Thanksgiving

    12/20/13 - Eight Months Old

    01/13/14 - Recent FAQs

    01/20/14 - Nine Months Old

    02/05/14 - Ezra & Friends: 3 in a Million

    02/14/14 - Our Hearts Are Full

    02/22/14 - Ten Months Old

    02/26/14 - Eleven Months Old

    04/10/14 - Feelin' the Love & Giving Thanks

    04/20/14 - One Year Old 

    05/15/14 - Reflecting on a Year

    08/13/14 - Fifteen Months Old

    10/10/14 - Surgery This Week

    03/06/15 - Another Doernbecher's Day

    05/17/15 - Two Years Old

    07/30/15 - RASopathies Symposium

    Watch Ezra grow:





















    2 comments:

    kellym9999 said...

    Those pictures are adorable! You have a beautiful family. We have a 13 year old daughter with Ns

    Anonymous said...

    I came across your blog today while on Instagram and saw a picture of your sweet little boy. Your blog is literally the exact same story of our life for the past year and a half. Our sweet little girl, Keira, was born on April 27,2013 with literally the exact same weight, health problems, mysteries, etc. after searching for a diagnosis, we received the same one as well, PTPN11 with Myeloproliferative disease. I felt so isolated this past year going through what I feel as though no one understands. But now, I know that your family was going through the same things at the EXACT same time as mine. God bless your little Ezra and your family. Continued good health to him!!! Coleflynn@hotmail.com