Why the “Net” Matters—a story about Leo

You may have heard John Burroughs’s phrase, “Leap, and the net will appear.”  Well, on February 29, 2020, Leo quite literally made his “leap” into the world—a leap year baby. And it wasn’t long before the “net” became important to Leo and his parents.

Despite a perfect full-term pregnancy, Leo’s parents and medical staff immediately grew concerned by some of Leo’s movements—the uncertainty was unsettling. It wasn’t long before the medical staff discovered Leo was having seizures. 

The first significant “net” for Leo’s family was the NICU at Helen DeVos Children’s Hospital. After a two-week stay, Leo was stable, and his parents could take him home.  It was a wonderful feeling, but they were still working to determine his health—they went home with uncertainty.  

Following a month of tests and doctors’ visits, Leo’s neurologist diagnosed him with cerebral palsy. His parents had answers, but now they had to navigate how to support Leo’s needs and development.

Leo faces day-to-day challenges that require a lot of hands-on support from his parents. He has low muscle tone, which impacts his core and head strength. Sitting upright and keeping his head stable is difficult. Leo’s cerebral palsy also causes him to have tight legs, affecting his mobility. These are challenges that require intentional work.

Enter the next significant “net” for Leo’s family. They began searching for a support network to help Leo with his daily obstacles. They learned about the Conductive Learning Center, where a highly qualified staff works with young people with motor challenges—a perfect fit for Leo. 

Leo works hard at the Conductive Learning Center, and hard work requires energy.  Because cerebral palsy can cause significant oral motor challenges, he wasn’t getting the daily nutrition needed to grow stronger.  

His parents decided it was time to try supplementing Leo’s diet with a GI tube. Through his feeding tube, he receives a healthy, homemade, blended diet. Since making this change, Leo has been thriving, and his health has improved. As Leo’s mom puts it, “Healthy food is the best medicine!”

Leo’s parents have celebrated some big WINS through his therapy with the Conductive Learning Center. When he was two years old, Leo couldn’t stand alone, bear weight through his legs, or hold his head up while sitting. Now, at age four, Leo can stand for long periods with only some balance support. He can also take long walks with a walker and a support person. 

In fact, all areas of Leo’s life have improved from his hard work at therapy. He’s learning social interaction and even laughs when things are funny. Leo sleeps better at night because he’s able to move his body more during the day. He’s gaining weight and building muscle closer to the age-appropriate rate. 

Leo is gaining strength, mobility, and some independence. That’s a long list of WINS to celebrate!

Leo’s parents are determined to support his progress so he can have the best possible quality of life. The Conductive Learning Center is helping them achieve this goal. Mom is Leo’s full-time caregiver, so their family relies on one income.

Sadly, their insurance doesn’t cover the costs of Leo’s therapy. When you factor in significant medical needs and the cost of daily life, the budget was being stretched too far.  

The thought of pushing pause on Leo’s therapy was heartbreaking—he’s come SO far.

Fortunately, another significant “net” emerged for Leo’s family—Family Hope Foundation. A scholarship for therapy removed the barriers and helped Leo’s parents bridge the financial gap. A load was lifted at a pivotal point in his development, knowing that Leo could continue moving forward—there would be more WINS!

What does hope mean to Leo’s parents? “Hope is confidence in a brighter future for Leo and our family. Hope is knowing he will be happy and have a great quality of life.  Hope is knowing Leo is loved unconditionally and supported by his community.”

-Leo’s parents