Meet The Founder
After her son O’Syah was diagnosed with a rare genetic disorder in 2016, Marlana faced numerous challenges, including financial, educational, and community barriers in raising him. With a strong background in education, having worked for 10 years in the inner city of Cleveland, Marlana gained invaluable insights into navigating complex systems. Driven by her personal experiences, she established Special Creations to bridge the gaps that many families encounter.
Her mission is to provide essential services and programs that specifically cater to the needs of families caring for children with special needs. Marlana's passion lies in serving this community, as she strives to be the support she wished she had while navigating the complexities of the special needs journey. Through her work, she finds joy and purpose in helping others thrive.
O’syah has taught me the importance of empathy and the value of seeing the world through the eyes of others
We are more than caregivers, we are champions for our children
Marlana K
Meet Our Guiding Light
O'syah
O’syah Todd is an amazing 11-year-old who lights up the lives of everyone around him. Born on August 3, 2014, O’syah’s journey began with challenges that became apparent early on. Diagnosed at the age of 2 with a rare genetic disorder called STXBP1, O’syah has faced numerous obstacles, including difficulties with cognitive functions, activities of daily living (ADLs), physical movement, and seizures.
His path has been shaped by intensive therapies, including occupational, physical, and speech therapy. Through remarkable determination, O’syah took his first steps at 2 ½ years old and continues to inspire others with his incredible spirit. Although he remains nonverbal, he communicates through his sweet, kind, and loving personality.
In 2019, after a determined fight for his rights, O’syah’s mother successfully advocated for him to attend a specialized school that meets his unique needs. Surpassing initial expectations from doctors who doubted he would walk or achieve other milestones, O’syah has become a powerful example of resilience and hope.
O’syah is the heart and inspiration behind Special Creations, teaching us the true meaning of unconditional love and the importance of fighting for basic human rights. His journey reminds us of the strength and courage found within every child, and he continues to be a source of joy and purpose for his family and the community.
What Is STXBP1?
STXBP1 disorder is a rare genetic condition caused by mutations in the gene STXBP1. this gene plays a vital role in the functions of neurons in the brain. It primarily affects neurological development and can lead to a range of symptoms no case is one in the same.
Prevalence: It is estimated to impact (1 in 100,000) making it a rare condition, many may go undiagnosed and misdiagnosed.
As of 2022, about 534 people with STXBP1-related disorders have been described in the medical literature and there are an estimated 750 cases known worldwide
Reported a vast majority of STXBP1 cases are De Nova: meaning the genetic mutation occurs spontaneously and is not inherited from either parent.
Simplex Complex Cases: Most report individuals are the only family members known to be affected.
