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 any of these organizations who are leading the way in helping children like Ezra who have Noonan Syndrome and/or JMML
(in no particular order):

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

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