Brett's Story

Brett is 17 and one of triplets. Brett and his brothers were born premature at 34 weeks. After a stay in pediatric intensive care, Brett came home with difficulty feeding and tightness in his muscles. Doctors said it was due to reflux. But, as the three boys developed side-by-side, it was quickly evident Brett was struggling. His parents fought to get him Early Intervention therapies as an infant. This proved to be the right path as Brett was not able to sit up, crawl or walk. At age two Brett was diagnosed with Quadriplegic Spastic Cerebral Palsy. 

Brett is happy and healthy and headed into a transition program post high school to explore options for his future. He relies on a wheelchair for mobility, an assistive tech device to help with communication and needs assistance for all areas of daily living from changing positions to eating. 

In fall 2024, Brett had surgery to place a Baclofen pump which provides a steady stream of muscle relaxing medication through a catheter in his spine. They are still working to get the dose to a helpful rate. 

In 2019, Brett had surgery to reconstruct his hips that did not develop properly due to his inability to stand and walk independently. He had another surgery in 2020 to fix a blood flow issue and remove the metal hardware.

None of us can predict the future. Due to growth and wear and tear some of Brett's equipment is reaching it's limits. Brett is also transitioning from pediatric equipment to adult equipment. The wheelchair he relies on daily is one example. Insurance helps cover some of the cost of these expensive items, however,  the out of pocket is still high.  And, there are many items insurance will not cover or has limits to what it will cover. An adaptive shower and toilet seat are not covered but needed for every day hygiene. Brett is getting too heavy to lift, but insurance doesn't cover the cost of a caregiver or a medical grade lift to transfer him from his bed to his chair, toilet, shower or other areas. Insurance doesn't cover ramps for accessibility in and out of the house or an adaptive vehicle.