April 2023 Special Needs Living Akron/Canton

MEET THE ENOLD TWINS: LIAM AND MARK

WRITTEN BY DEBORAH RILEY PHOTOS BY JULIAN CURET

In some ways, identical twins, Liam and Mark Enold are typical 4-year-old boys. They love Goldfish crackers, mashed potatoes, Veggie Straws, and Oreos. They love to color and watch Thomas the Train. Playing with cars, trains, dinosaurs, and building Legos are their favorite activities! The boys love to climb all over and to get into everything they can, especially big brother Mack’s things. However, in many other ways, they have had far from a typical start to life. Liam and Mark have overcome many significant challenges in their 4 short years and still face additional challenges as they continue on life’s journey. Fortunately, they have the love of their mom and dad, Brooke and Teddy, as well as big brother, Mack, to get them through!

At 34 weeks into Brooke’s pregnancy with Liam and Mark, it was discovered that there was fluid buildup around Mark’s heart. Doctors decided that it would be in the boys’ best interest to go ahead and deliver at 34 weeks. The twins spent 24 days in the NICU learning how to eat. Mark was just 3lbs 9oz and Liam was 3lbs 13oz. At 1-yearold, the twins were diagnosed with a genetic disorder called SETD5. When they were diagnosed, there were less than 50 people with the condition worldwide. Available information on the condition was scant, and the Enolds were told that Liam and Mark may never walk. The boys couldn’t sit up on their own until about 2 years old, and were 2 and a half before they took their first steps. Mark took to walking sooner than Liam. After taking their first steps, Liam waited almost another 6 months before walking consistently. Initially, the boys started using gait trainers to walk, as well as AFOs and SMOs. Now they are able to walk with just the assistance of an insert around the bottom of their feet. These days, they seem to find a way to get whatever they want by climbing on whatever they can find!

Feeding has been a challenge with the boys since day one. As infants, they would not eat food nor use a baby spoon. In fact, they never ate any baby food at all. These days they do eat some regular food, preferring things such as snacks like Veggie Straws, Goldfish, chips, and crackers. Despite doing better with food, they still do not eat enough to fill them up. To ensure they are getting all of the nutrients they need, they are given Pediasure Peptide. The boys also struggle with aspiration and must have any liquids they consume thickened to a “honey consistency” to prevent anything from accidentally entering their lungs.

The boys have been in various therapies since coming home from the NICU, and continue to participate in therapies today. Liam and Mark use an AAC device to help communicate with others. When they first started working with Physical and Occupational therapists, it was extremely challenging for everyone involved. The boys would just cry and cry, making it hard for the therapists to make progress. It got so bad that they took a break from therapy for a while. Once returning to therapy, the boys did much better when they could take their special blankets. Now they absolutely love it and race to be the first one in! These days they participate in Physical, Occupational, and Speech therapies at Akron Children’s Hospital. Akron Children’s has been a huge part of the Enold family’s life and they continue to support the Enolds with whatever they need! Brooke says that she is appreciative of all the boys’ therapists and teachers! “They have been there from the beginning and were able to help us understand new things going on and guide us where we need to go next.”

Brooke’s advice to parents and families in the Special Needs Community is, “Don’t be afraid to ask for help. There are always people out there willing to help and give advice.” With the love of Liam and Mark’s family and the support of their therapists and teachers, the Enold Twins have a bright future!