Despite the common misconception that stroke only occurs in adults, pediatric survivors have stories of strength and resilience to tell, too. For childhood brain injury survivors like Gus, a Stroke Survivor Fund recipient, their experiences can also evidence the importance of a strong support system in stroke recovery.
At only thirteen years of age, Gus suffered a ruptured, previously undetected, brain aneurysm. After initially spending time in the PICU in Miami, Gus’ family made multiple moves across the country to find the most accessible medical care for him. They braved daily walks to his therapy during the brutal Chicago winter and even faced a period of forced separation due to the then-unfolding COVID-19 pandemic.
Though his injury has been a testing journey for Gus’ family, their support is loving and unwavering. As the clever, funny, and thoughtful eldest brother of four, they know Gus as a voracious reader, geography nerd and sports geek. As his mother Mary puts it, Gus is “a true student of life, both intellectually and emotionally.”
Even with all of the challenges they face, Gus and his family are determined to pursue his recovery.
Managing Gus’ care has brought significant change to each of their lives. For Mary, navigating the balance as both a caregiver and a parent is an immense undertaking – two full time jobs. Now, at 19, Gus is booked and busy with a rigorous recovery schedule to attend to each week. Mary speaks to her experience: “…we are still white knuckling it through the initial trauma of this entire experience, trying to give our son everything he needs to find his best path and to keep life as stable as possible for the other three as they grow.”
A typical day in Gus’ life includes attending multiple sessions of physical therapy, behavior therapy, swallow therapy, and PPEC (Prescribed Pediatric Extended Care). Each therapy session can be up to three and a half hours each. He often sleeps the entirety of Saturday, thoroughly exhausted from the physical and mental energy that his therapy requires daily. At the same time, Gus remains an engaged scholar – additionally attending homeschooling throughout the week, defying incredible odds in order to obtain his high school diploma.
Gus has many achievements that demonstrate his therapy in action. In his early youth, Gus found joy in running races and being an athlete. He now uses this passion to measure his progress. The first race Gus walked about 90% of the 5k, only being pushed for a portion. The second race he walked all of it, with several breaks, and beat his previous time. Gus remains focused on regaining his everyday abilities, personal independence, and completing his education.
These recent advancements evidence that some Survivors greatly benefit from highly specialized and frequent therapy. Mary is firm that Gus “has demonstrated improvement with every new opportunity he has been provided.” However, a typical private insurance plan does not cover this type of care, placing a massive financial burden on top of an already overwhelming journey. Transportation is yet another issue in accessing these therapies, as Gus needs a handicap accessible van. Mary explains: “Gus is Medicaid qualified now and has been for a year and a half. The first 4 years however just destroyed us financially (because private insurance wouldn’t cover). Now there continues to be tons of costs out of pocket that insurance won’t cover but nursing support currently is covered.”
With our Stroke Survivor Fund, we were able to help fund some of these highly specialized therapies for Gus. The impact of this funding has been deeply felt. Mary shares: “…when we receive a blessing like this, my whole family (parents, my siblings, my kids) pauses in gratitude and celebration. Thank you.”
We thank Gus and Mary for allowing us to share his inspiring story with our community. To support Gus’ journey, please follow him and his family’s efforts via Instagram at @ComeBackStrongerGus. They also host bake sales to raise funds for Gus, with event information available via Instagram.
Mary beautifully sums up the power of Gus’ story: “I firmly believe that the impact of Gus’ recovery will be greater than his injury. So we are fighting the fight.”
