Meet The Isaacks Family: Jason, Megan and Owen

By Lisa Defilippo; Photos by 21 Vines Photography

At 8 years old, Owen Isaacks is a force to be reckoned with. A future all-sport athlete and sports enthusiast, like his Dad. Owen had stints in baseball, basketball, soccer and swimming and, most recently, received his yellow belt in Tae Kwon Do, with winter plans to try wrestling!

Hard to believe much of anything has ever slowed this kid down. Meet proud parents, Jason and Megan Isaacks, and superstar, Owen Isaacks.

IN THE BEGINNING

When first-time parents Megan and Jason Isaacks went in for their 20-week gender-reveal ultrasound, they heard they were having a sweet baby boy, and they were

over the moon. Those feelings of elation soon changed to worry as they also learned there was an issue with the development of the baby’s right arm — something they wouldn’t know the full extent of until Owen was born.

“Owen was born with a genetic condition called phocomelia, which resulted in his right arm not fully developing,” explains Megan. “He has a small hand with three fingers that formed off his right shoulder, but there is no limb.”

After Owen was born, he was seen by a geneticist who immediately identified the limb difference as phocomelia. Jason and Megan decided to undergo genetic testing as well in hopes of finding answers.

“The most difficult part about learning of the limb difference [at 20 weeks] were the unknowns since they weren’t able to identify the exact cause,” said Megan. “After genetic testing, we discovered we both have a recessive gene that resulted in the phocomelia, which is essentially a one in a million chance of us finding one another and procreating.”

Megan goes on to explain how lucky they are; that many phocomelia cases include multiple limb defects, both upper and lower, and can also cause a heart condition, as it did for Owen, but thankfully by six months of age, the small hole in his heart completely closed.

“When we saw the extent of his limb difference, we definitely worried about how he would get through life,” shared Megan. “Our family was the thing that got us through it all. My mother is a retired special education teacher, and she has a brother who was born with a moderate intellectual disability. My sister is a developmental preschool teacher in the Hamilton Southeastern school district, plus my own career working with adults with intellectual and developmental disabilities [as Social Services Manager at Janus Developmental Services, a company that supports adults with intellectual and developmental disabilities] shows that my family is no stranger to the special needs community!

“A limb difference to the extent that Owen was born with was definitely different than anything we had experience with before, but we all came together to support each other and figure out whatever it was that was needed.”

In terms of services, Megan says First Steps made all the difference for your child’s family, providing in-home physical therapy (PT) and occupational therapy (OT) from the time Owen was a few months old until he aged out at 3 years old. “I had pregnancy Medicaid at the time, and the hospital social worker gave us information on First Steps after Owen was born. First Steps was an amazing resource that not enough families know about. My advice is to always reach out for an evaluation if you ever have any concerns about their development.

“First Steps also assisted in setting up the evaluation through Westfield schools to qualify Owen for developmental preschool, which was life-changing for him, including the bus ride. He received speech and OT through the school while also developing amazing social, emotional, and academic skills,” she continued.

Owen entered kindergarten with an IEP with a primary diagnosis of orthopedic impairment, and by the end of second grade, that IEP turned into a 504 plan stating OTs would be on consult for his teachers, if needed, in the future.

“His OTs at Westfield were amazing at finding adaptations for him,” gushed Megan, although as Owen has gotten older, he has found his own ways of doing things. “Towards the end of first grade, Owen started rejecting some of the OT’s recommendations, such as using items to steady his paper so he doesn’t develop back problems later in life. Instead, he chooses to lean down to use his “baby arm,” as he affectionately calls his right arm.

“He doesn’t like to use the different items because other students don’t have to use them,” explained Megan. “We are now exploring options to be proactive, instead of reactive, like chiropractic care and physical therapy.

The biggest challenge for Megan and Jason was whether or not to pursue a prosthetic for Owen at this time, although he has been asking about one, Mom says, for the last year or so. “Owen received his first prosthetic when he was 9 months old. Prosthetic Solutions of Indiana-Indianapolis custom made the arm for him, and they were amazing to work with.”

Although the doctors were excited to work with someone as young as Owen, they had never worked with anyone with such a significant upper limb difference. “The prosthetic that they created for Owen had to wrap around his upper torso in order to stay in place,” Megan explained. “Owen absolutely hated it and would cry every time we put it on. We decided that we would never force him to wear a prosthetic, and we would let him decide when and if he wanted one.”

The lack of information on such an extensive prosthetic, the cost, and the need for a new one to be made each time he grows — which Mom is convinced is at least an inch a week — are challenges the family continues to navigate. As for Owen, Mom says he is convinced it’s going to be immediately like a superhero arm. (Pretty sure you already have one of those, kid.)

“Owen has always surprised us along the way in his life,” she continued. “He has accomplished things we never could have imagined. He had a six-pack by the time he was 9 months old because he would just use his abdominal muscles to pull himself up (from laying down to a sit-up) instead of using his arm to prop himself up!”

As Owen has gotten older, his parents wondered how sports would come into play, but along his young athletic career, the Isaacks have met the most wonderful people who have helped find adaptations for him. “Time and time again, Owen has proven to us that he is resilient and has always been able to figure out his own way of doing things!” cheered Megan. “Owen is a kind-hearted person at his core and has always been empathetic towards others. He is also very inquisitive and smart. He will always strike up a conversation, especially with adults. He has frequently, throughout his sports career, not been paying attention to the game out on the baseball field or basketball court because he was too busy talking to his coaches!”

Owen had a speech delay when he started developmental preschool, finally overcoming the delay right before kindergarten, and watching all his progress just makes every word that much sweeter, says Mom. “Now he never stops talking!”

The Isaacks share that one thing they are concerned about when looking to the future is how other kids will treat him because of his limb difference. “We are so lucky that he has a great support system of friends in the Westfield school system,” Megan said. “There is actually another boy who is a year older than Owen who was born with an upper limb difference as well! This friend lives right down the street from us, too! It is definitely fate that we live so close to another person and family to share our experiences with one another.”

FUN THINGS TO KNOW ABOUT THE ISAACKS FAMILY

• Jason is a manager at Kona Jack’s/Daddy Jack’s in Indianapolis. “All the employees are very supportive of Owen and treat him like he owns the place anytime he is there!” shares Megan.

• They share their home with their two black kitty cats, Poosy Cait and Szechuan, the “best cats ever!”

• The family enjoys amusement parks (Owen’s favorite is the wave pool), Mexican food, and watching all the sports (Dallas Cowboys, Mavericks, Rangers). Owen’s favorite movie currently is Sing, and he loves both dancing and singing.

• Owen and Jason play games like Roblox together. Owen plays on an old phone, and he is able to use the fingers on his “baby arm” for some of the controls.

• Owen was given the chance to be Jr. Blue at an Indianapolis Colts game in 2019. “It was the coolest experience,” said Mom.