Ezra Jordan Fineman is four years old and loves music, spaceships, and playing on his swing set. He’s animated and high energy, loves building towers with blocks and can tell you every single thing about rocket launches. In so many ways he’s a typical 4 year old. Except nothing about Ezra is typical. 

When Ezra was just 4 months old his pediatrician became concerned when his weight started to drop and his breathing became erratic. A routine check up turned into a nightmare as they spent the next month going from specialist to specialist, receiving the news every parent dreads. Sweet, perfect Ezra was diagnosed with a rare primary immune deficiency called Hyper IgM Syndrome. His body does not make antibodies, making it impossible to fight infection. The only cure is a bone marrow or stem cell transplant. 

Ezra’s parents turned to the Gift of Life Bone Marrow Foundation. There were no matches in the worldwide registries so they started holding drives to find a potential match. Their efforts still did not result in a match for Ezra. One year ago Ezra underwent a bone marrow transplant from partially matched umbilical cord blood. it was not a perfect match, but it was the only hope they had at a possible cure. He endured the pain with a smile, always looking on the bright side and finding humor during even the darkest days.

“One of our biggest fears was that the transplant process would leave him broken,” his mom Robin said. “He was such a spunky, funny, happy kid. We were so afraid of what would happen to his spirit. But he’s so resilient. He was in isolation for three months, but never once asked to leave his hospital room. Instead he taught every doctor who walked into his room about space shuttle launches. He made the nurses watch launches on the iPad, and cracked everyone up making silly jokes. Ezra brought so much light and happiness into that hospital room.”

They waited with baited breath. His parents kept a blog to keep family and friends informed, and on transplant day, May 17, they wrote “Intense. That’s probably the best way to describe today, although it doesn’t capture the crazy mix of emotions that we experienced today.” For seven  months they updated their highs and lows and on December 23, 2012 they shared the devastating news. “The transplant has failed. Ezra has only 1% donor cells left. There is nothing left to do except start the dismal process of talking to the doctors about how just how bad are our bad options.” 


Though the search for a match continues to come up empty for Ezra, thanks to drives held across the country there have been 95 matches for other patients. A silver lining in a dark situation. “That’s always comforted us,” she said. “It’s made us think that — if anything — we’re going through this to help others.”

When I met Ezra I was blown away. His laugh is infectious, and he makes the silliest faces I’ve ever seen. He showed me his bottle of “Genius Water” (Smart Water that he calls Genius Water) and said “I was born really smart but this water helps.” He chased me through his yard and brought out his awesome camera to show me how he can take pictures too. We ran, climbed, jumped and laughed. I watched his parents watch him. The pride and love in their eyes brought tears to mine. When they watched Ezra run towards my camera I noticed his parents whispering to each other. Apparently he had not run that much without coughing fits since before his transplant. Ezra brought his ‘A Game’ to our session and I could not be more proud. He ran around his playground with such energy and zest for life it was difficult to remember that Ezra was any different than any other 4 year old. But his maturity (despite the myriad of silly faces) makes it a bit more apparent what he’s been through. 

Inside he walked me through every step of a shuttle launch, animatedly counted down from 10 to 1 and zooming his Spaceship Endeavor around the room. Endeavor is apparently the “best spaceship ever made.” 

“Ezra’s spirit and resilience give me hope,” said his mom. “I go to sleep every night wondering if tomorrow will be the day his disease progresses and he starts to go downhill. It’s as if there’s a sword over all of our heads never knowing when it will drop down.” But his parents try not to think about the disease and instead focus on their happy little boy. He’s carefree and vivacious. Ezra brings light wherever he goes. 

(Note, one thing that really upsets me is the fact that there are so many swabs waiting to be tested but there aren’t enough funds to test them. Inside the boxes and boxes of swabs may be many more matches, possibly even a match for Ezra. If you can make a donation to help cover the cost of processing the cheek swabs or to order a swab kit today through Ezra’s Donor Circle sponsored by Gift of Life visit https://www.giftoflife.org/Help4Ezra)

Ezra, you are inspiring and amazing. You seem to understand more about life, resilience, and hope than people 10 times your age. I am in awe of your energy and enthusiasm, your infinite knowledge and crazy sense of humor. Soar high kid, you’re incredible. 


You can learn more about Ezra and follow his journey at www.facebook.com/help4ezra. I was privileged to meet Ezra as a volunteer photographer for Navi’s Pictures, an organization created in memory of 2 year old Navi Chen.