Ezra Dunn

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Age: 22 months

Cognitive Age: 22 months

Therapies: Physical, Occupational and Speech Therapies

Schooling: N/A

Siblings: Daniel (12), Breccan (5)

Parent: Matthew and Rebecca Dunn

Kabuki Symptoms: Hyperinsulinism, speech delay, walking delay, feeding problems, G-tube, sensory seeking, nystagmus, hypotonia

Ezra's Story: As the parents of two healthy boys, Matt and Rebecca thought they knew what to expect with their third child. Rebecca’s pregnancy was largely normal, save battling pre-eclampsia in the third trimester. Ezra was born at 37 weeks, and he came so fast that the Dunn’s almost didn’t make it to the hospital! Thank goodness they did, though, because Ezra wasn’t breathing when he was born, and his skin was black and blue from a fast delivery. The nurses and doctors worked fast and got Ezra breathing, but it was only the first of many obstacles to come their way.


In the first 12 hours of Ezra’s life, he quit breathing four times and was put on oxygen. He was suctioned several times and had a central line placed. He struggled with feeding from the beginning, breastfeeding or bottle, it didn’t matter. His blood sugar kept dropping and would not stabilize, contributing to his NICU stay. His newborn screening came back abnormal and more tests were run, but nothing conclusive was returned. After 10 days, Ezra was discharged. He was off oxygen, but his sugar still wasn’t stable.


The Dunn’s didn’t have time to think about next steps, though, Matt’s military position saw them move from Virginia to Kansas when Ezra was just 6 weeks old. That’s a big move without kids, add in the two typical ones and a newborn with a slew of unanswered questions, and it was certainly a trying time for Rebecca and Matt.


When Ezra was 2.5 months old, doctor’s landed on his diagnosis of Kabuki syndrome. Being thrown into the rare disease world brought on a lot of fear and anxiety, so the Dunn’s moved across the state to St. Louis so Ezra could have better medical care. At four months old, Ezra had his first surgery to have his G-tube placed. It was a trying time as the nurses struggled to place an IV and blew several veins because Ezra is such a tough stick. On top of that, he was in the hospital for 8 days for this procedure because his blood sugar kept dropping, so he was started on diazoxide for hyperinsulinism.
 

Ezra, born in 2020, is a pandemic baby. So on top of everything else going on in their lives, the Dunn’s had additional concerns for their precious baby. Those concerns would come to fruition when Ezra was nine months old. He contracted COVID and was hospitalized, and while that is scary, it also turned out to be a blessing. During that stay, doctors discovered that Ezra had fluid on his heart from the diazoxide. That fluid had to be drained and then Ezra was switched from diazoxide to octreotide. Octreotide is an injection given twice daily, but it didn’t help. He was switched back to the diazoxide with Rebecca and Matt praying he didn’t get too much fluid on his heart. This hospital stay was three weeks, but he came home and that is what matters!


Ezra has had many ER trips for croup and other things, and tends to play with his G-tube a lot, pulling it out on the regular! Still, he is largely stable on his ever changing diazoxide dosing and is monitored closely by cardiology to assess fluid buildup. Should more fluid return to his heart, he will have to have another surgery to drain it. In the meantime, the Dunn’s are doing everything they can do ensure that Ezra is safe and happy and as stable as he can be. This includes his older brothers, who have learned to help with his feeds and love to help entertain Ezra when he is attached to a feed.

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Ezra's Favorites: "He loves books, he loves his inny bin, he enjoys being outside and going for rides in a side by side. Doesn’t care for the car, and hates being strapped down or confined."

Ezra's relationship with his brothers: "He has two older brothers who are so sweet and helpful with him. 


They know how to help with his feeding and entertain him while he is hooked up to his feed."

Advice for Kabuki families: "Reach out to others in the community who understand. The doctors are smart and trying to help but the Kabuki family has so much wisdom and advice to see you through this. The first year is by far the hardest."

Advice for parents of "typical" children: "It’s hard! It’s ok to feel all the feels. It’s not your fault. These kids overcome obstacles and break down barriers. They are true warriors. Don’t be afraid to be their voice and share your concerns with the doctors, you see them everyday, you know our child!"

How Ezra has impacted the family: "We had to move to be closer to hospital to provide his care, my husbands career in the military will end with this assignment since we are not able to move. This kids have trauma from the hospital stays and seeing their little brother go through so much. We are so tired from lack of sleep as these kids don’t sleep."

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Ezra continues to be followed by at least 10 specialists and is monitored closely by his parents and siblings. It’s quite clear that he is a very loved little boy! On May 4, Ezra had a G-tube revision, so it’s likely that the Dunn’s are in the hospital as this story is shared. Reach out and say hi, remind them that they are not alone, and say a prayer that Ezra’s sugars remain stable so they aren’t stuck there for too long! We’re all rooting for you, Ezra. Stay strong, little buddy!

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Written by Serena Burks