Extraordinary Ezra is one of the bravest kids we have seen pop up in our community. We reached out to his mom to tell us a bit about her family and what Ezra is up to.
We have loved seeing your family show up on our feed. Tell us a bit about your family!
Hi Letterfolk friends! We are a family of four (+ labradoodle) living our best lives in the beautiful Pacific Northwest: Josh, Elisabeth, Judah, Ezra (and Luna). Josh and I met while attending Oregon State University. Josh was an all-star goalie on the lacrosse team and I was the president of the women's choir...we were a match made in sports and music heaven ;) We were married shortly after graduation in my parents' backyard with tall evergreens as our backdrop. Josh is an engineer and works for an amazing company called NuScale Power. I am a yoga teacher at Willamette Valley Power Yoga and spend my free time helping my friends with graphic and interior design projects and advocating and volunteering for the RASopathies Network. Judah, our oldest son, is a creative and kind 2nd grader who loves Star Wars, legos, and Pokemon cards. Ezra, our youngest, is a feisty and funny kindergartner who also loves legos, Harry Potter, and has a deep affinity for Batman. We are total homebodies who love home improvement projects and hosting parties. And we also love to travel! We take at least one trip to Bend, Oregon a year to attend an outdoor concert and paddleboard or kayak, and our favorite vacation spot is Ko'Olina, Oahu, where we could spend hours snorkeling and hanging out on the beach together.
Ezra is the cutest, bravest kid in the world. Tell us a little bit about Extraordinary Ezra.
Our family's story takes a unique turn with our Extraordinary Ezra. After a textbook pregnancy, Ezra was born with frightening and unexpected medical issues. We immediately began whisking him away to doctors’ offices and hospitals within days of his birth to begin what seemed like a never-ending process of testing and procedures. It wasn’t until Ezra’s second bone marrow biopsy at four months old that we finally had our diagnosis: Juvenile Myelomonocytic Leukemia (or JMML – survival rate 50%). In a typical child, the only hope for a cure for JMML is a bone marrow transplant. We immediately began the search for a donor (starting out by testing our then 3-year-old Judah, to see if he was a match) and Ezra underwent surgery to implant a feeding tube. Doctors thought that Ezra was failing to thrive, and he began an oral chemo regimen to stabilize his blood counts and shrink his dangerously enlarged spleen. At six months old, Ezra’s last round of genetic testing revealed that in addition to JMML, he also has a rare disease called Noonan syndrome. For some reason (that is still being researched), children with BOTH Noonan syndrome and JMML *can* go into spontaneous remission WITHOUT bone marrow transplant! Ezra was considered in remission around the time of his first birthday, but Noonan syndrome still affects him with abnormal blood counts from time to time (he bruises and bleeds easily). Noonan syndrome also affects him in other various ways from head to toe, most notably with very small stature (he is almost six and wears 3T clothing), vision issues, food intolerances, and a predisposition to get sick.
We’re sure Judah is a great older brother. How does he help out with Ezra?
In many ways, Judah had to grow up very quickly after Ezra was born. One of the most heart-wrenching parts of Ezra being so sick as a baby was having to be away from Judah while we went to appointments or stayed in the hospital for Ezra's surgeries. Then and now, Judah has been such a resilient and loving big brother. One of the greatest joys this year has been watching Judah walk Ezra into school each morning. Ezra's backpack is too heavy for him to carry comfortably (but necessary for transporting his lunch box, school papers, and library books) and Judah carries both his and Ezra's backpacks into school. Ezra's classroom is almost directly across the hall from Judah's, and nothing is more comforting than knowing they are so close together. Judah is starting to speak up and advocate when others comment on Ezra's size or ask about Noonan syndrome. He also made the decision last year to shave his head in solidarity with childhood cancer patients and raised over a thousand dollars for research! We could not be more proud of him.
What advice would you have for friends/loved ones of families battling Noonan syndrome or other rare diseases?
The early days of a Noonan syndrome or rare disease diagnosis can be traumatic and overwhelming. Our greatest piece of advice is to keep the faith and never give up hope. We would also advise to celebrate every single obstacle they overcome, big or small! Ezra has battled and overcome more health obstacles than most people will face their entire lives, and we celebrate all his tenacity and resilience in doing so! We would also tell these families to find their people. Chronic illness and rare disease life can be very difficult, and the support of loving family and community is crucial! Lean on the people you love, and someday, you might just get to pay that same support forward. It is the most fulfilling, beautiful thing to support other families in their similar times of need. Finally, social media support groups are an amazing resource. As rare as our journey might be, online support groups on Facebook and connections we have made through Instagram with families with our same diagnosis have been essential to navigating this journey.
We are so impressed with your honesty about everything in your life and love that you’re an advocate for helping others understand rare diseases. What’s the best way to get better informed and learn about ways to contribute?
Thank you for saying that! From my experience and what I have gleaned from adults living with Noonan syndrome and other illnesses, honesty and telling our story openly is such a powerful thing! My belief is that the more we say the words, "Noonan syndrome," out loud, the more it serves to demystify them. I believe that awareness leads to inclusion and education...and ultimately to the support of research, treatment, and cures! The best way to learn more about Noonan syndrome and support research for its larger group of related conditions called the RASopathies is to visit the organization I volunteer with, RASopathiesNet.org
. Our mission is to connect, collaborate, and cure by bringing patients, families, researchers, and clinicians together. My favorite organization for uniting the rare disease community and bringing joy to advocacy is Global Genes. I had the honor of teaching the sunrise yoga to participants at their RARE Patient Advocacy Summit in California last fall, and it is an event I look forward to and learn so much from every year!
And finally, what’s on your letter board right now?
"Care about Rare!" February is Noonan syndrome Awareness month and February 28th is World Rare Disease Day! We love spending this month celebrating all Ezra has overcome and inspiring others to care about rare :)
If you or someone you know has a story you would like to have featured, send us an email at firstname.lastname@example.org.