About Us
Riley was born on August 6, 2007, in perfect health and achieving all developmental milestones at his six-month check-up, during which he received his routine vaccinations. Tragically, just two days later, Riley began experiencing seizures that rapidly intensified. Despite numerous medical evaluations, his condition was initially diagnosed as Infantile Spasm Syndrome—a severe form of epilepsy. Further investigations suggested a mitochondrial disorder might be the underlying cause. After continuous and overwhelming seizure activity, a significant decision was made to discontinue all medications, which remarkably led to a temporary cessation of his seizures, allowing him glimpses of normal childhood activities. However, the early onset and frequency of his seizures caused irreversible developmental delays, preventing him from learning to walk or talk. In 2017, after being seizure-free for seven years, his seizures returned but were managed under the care of Dr. Condie, who also identified a rare genetic disorder linked to Riley's condition.
During this challenging period, I faced significant personal hardships as a single mother of three, grappling with financial instability that led to bankruptcy in 2012 due to overwhelming medical bills. Despite exceeding income thresholds for state assistance, the reality of our expenses was not recognized, adding to our struggles. The COVID-19 pandemic exacerbated these challenges, as finding adequate care for Riley became even more difficult. Ultimately, the suggestion to place him in a group home, located two hours away, marked a profoundly low point, reflecting the systemic shortcomings in support for families like ours.
In response to these experiences, I am dedicated to establishing a state-of-the-art residential facility for individuals with special needs. This center will offer comprehensive therapies—including physical, occupational, speech, and aquatic therapies—and amenities like a theater for family movie nights, which doubles as a worship space on Sundays, and a salon for personal care. Employment opportunities within the facility will be available for those who are capable, promoting independence and dignity. Moreover, we aim to improve conditions for caregivers by offering competitive wages, onsite daycare for their children, better work environments, and educational opportunities, including internships for aspiring special education professionals. Our vision is to foster a community where everyone is valued, supported, and empowered to thrive.
