The couple started out living in Centerville, where their oldest son, Ezra, was born.
“Ezra was born with low muscle tone, and he developed mobility issues,” Courtney said. “When he was eight months old, Ezra was diagnosed with brain cancer.”
Unbeknownst to doctors or his parents, Ezra also had an undiagnosed and rare genetic disorder called Klippel-Feil Syndrome, which is characterized by pain in movement and hearing loss.
“Doctors removed his tumor and Ezra had chemo, but the cancer came back,” Courtney said. “Then he participated in a clinical trial for new cancer treatments, and they found his disorder when they ran genetic tests.”
Turns out both Phil and Courtney both carry recessive genes, giving them about a 25% chance of having a child with Klippel-Feil Syndrome. By the time they discovered this, they had already had a second son, Issac, who was born healthy. Unfortunately, Ezra passed away in September of 2018. The family decided to move to Tipp City after his death for a fresh start.
Courtney, who has worked for the Department of Defense for 13 years, and Phil, a Certified Public Accountant who now works as treasurer for the Sister’s of the Precious Blood in Trotwood, were naturally devastated by the loss of their first son at just four years old. But as they were celebrating Issac’s second birthday, Courtney said they were surprised to find out she was pregnant again.
“We made a decision not to test for Klippel-Feil with this baby,” Courtney said. “But at my 20-week ultrasound they saw a heart abnormality and determined the baby would have Down’s Syndrome.”
Because of this, the couple agreed to further testing. Their third son would not only be born with Klippel-Feil and Down Syndrome but also a heart condition called Tetralogy of Fallot.
“We were in shock,” Courtney said. “We had a lot of meetings with doctors so we could understand what this all could look like in our son. Then we basically just waited for him to be born.”
Ezekial “Zeke” was born on Sept. 21, 2019, weighing in at just over seven pounds. Courtney said the couple had mentally prepared themselves for anything, knowing like his older brother, he would have low muscle tone and feeding issues. Zeke remained in the neonatal intensive care unit for nearly a month until he was stable enough to come home.
“Zeke came home with a gastric feeding tube but didn’t need oxygen,” Courtney said. “He had his heart repaired at eight months old and got a gastric feeding tube at 11 months old.”
Today, at nearly four years old, Zeke is doing well, especially since his parents connected with United Rehabilitation Services (URS) shortly after he was born.
“When Zeke was born, Phil had just started his new job and I had planned to go back to work full time since we didn’t plan to have another child,” Courtney said. “We started looking around for childcare and found URS. They helped us feel instantly that we could make all of this work.”
After staying home with Zeke for about four months, Courtney returned to work, but everything shut down in 2020 due to the COVID-19 pandemic and she was back at home.
“We have family close by, so they were able to help with Zeke,” Courtney said. “We waited until Zeke was about 2½ before we sent him back to URS, just to be safe.”
Courtney said that URS has made a huge difference for her son, who loves socializing with other children. Zeke also receives physical and speech therapy weekly, and he is making progress in mobility, communication and feeding skills.
“Zeke is still nonverbal, but he knows a lot of signs and he can tell people what he wants, when he’s not being stubborn!” Courtney said.
Zeke was chosen by URS to be the ambassador of this year’s Rubber Duck Regatta, which will be held on Sept. 16. Zeke will participate in the parade that morning and he will be attending the event, greeting people as they arrive.
The Rubber Duck Regatta raises money to support URS programs for the individuals with disabilities.
“Zeke is very social, and he loves the duck mascot,” Courtney said. “URS has been a huge game changer for us. Phil had to quit his job to help care for Ezra when he was in the hospital. We not only found childcare for Zeke, but we also know he is learning and getting therapy and he loves it!”
How to go
What: 20th Annual URS Rubber Duck Regatta (during the Hispanic Heritage Festival)
When: Saturday, Sept. 16
- 11:00 am – Hispanic Heritage Festival begins. Last chance to adopt your ducks! Ducks can be adopted for $5 or a Quack Pack (6 ducks for $25). Prize winners will be identified as the first eight individually assigned Ducks are pulled form the river. Winners will be announced at the Finale Event and will be notified via phone or email.
- 11:30 am – Watch Quackers and his crew march in the Hispanic Heritage Parade
- 4:15 pm – Quacky Kid’s Parade
- 4:30 pm – Duck Drop
Where: RiverScape Metropark, 237 E Monument Ave, Dayton
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