“She’s good with God,” Gia Holden Ruffin says with conviction.
Gia is referring to her daughter, Saniyah, whom she lost in July 2020 after a long and difficult journey caring for her severely disabled child until Saniyah tragically passed away just weeks before her 12th birthday.
Saniyah was born with multiple disabilities, including microcephaly, autism, cerebral palsy and epilepsy. Yet, Gia explains with a smile in her voice how Saniyah’s indomitable happiness made others smile wherever she went, despite the child’s own unforgiving obstacles, including being nonverbal. “She would light up the room,” says Gia.
Saniyah’s mother’s incredible dedication to her is almost unimaginable. Until she describes the reality that parents of special needs children go through. Once you hear Gia’s story from her – a mother’s perspective, you realize once again how strong parental love is.
To help other parents like her through difficult times and situations is Gia’s way to honor Saniyah.
Thus, “RunSaniyahRun.org” was born. It’s an organization Gia formed shortly after Saniyah’s death with the help of her fiancée and friends, who have helped Gia in every aspect of getting the organization formed. The “run” reference in the organization’s name is a nod to her family members who would encourage Saniyah to run while she valiantly tried to master walking, always with enthusiasm.
Gia has two other daughters, ages 9 and 29, and is now a grandmother of two. As a single mother working full time to support her family, the stress of not only taking care of Saniyah’s special needs, but also her other children’s own happiness and growth took its toll.
The last several months of Saniyah’s care included multiple stays at Nemours Children’s and Morris Hospital in New Jersey, where the staffs of both adored her.
To add to her grief when she lost Saniyah at home during a frightening grand mal seizure, Gia lost her father just weekslater. The perfect storm of all of these factors – during the height of COVID, no less – led to her decision to dedicate herself “as long as my days on earth,” she says, helping other parents like her to survive the difficulties of caring for a family member with any number of disabilities.
Trading in a lucrative (and intensely stressful) career in corporate sales, Gia decided to take “a leap of faith,” as she calls it, and set her sights on forming RunSaniyahRun, even managing to go through the complicated process of becoming a 501 (c) 3 nonprofit in the state of Delaware.
Amazingly, “Run” already serves all three counties, just months within its formation.
Kent County was Gia’s original focus, as Saniyah’s education and much of her care took place there. Now a resident of Rehoboth Beach, Gia has expanded “Run’s” reach, and currently occupies office space at the Georgetown Chamber of Commerce.
RunSaniyahRun’s mission has become a passionate full-time job for Gia, raising money and recruiting volunteers and partner organizations. Contributions include everything from financial support to in kind services and volunteer hours. “We respond to all sorts of requests from parents in need of assistance,” she explains.
Oh, and then there’s Gia’s own entrepreneurial business: Na Na’s Cotton Candy Kloudz. Incredibly, Gia learned the art of making and selling cotton candy – Saniyah’s favorite treat. It seemed right that she can honor her memory with a product that brought her endless happiness.
Now offering over 20 organic flavors of cotton candy plus sugar-free options, Na Na’s is available for schools and other fundraisers with proceeds directly benefitting RunSaniyahRun. It is also available at Snyder’s Candy in Rehoboth and by online order.
How was that accomplished, when the science of the candy’s fluff takes particular skill? “It’s a secret,” Gia laughs while describing how there’s been a lot of trial and error. For example, she learned the hard way that to produce cotton candy requires temperatures no higher than 72 degrees – not easy to do on site at a summer event!
“If only we had a properly equipped ice cream truck donated to us!” she muses. The visibility at public events could skyrocket their fundraising efforts.
RunSaniyahRun is now staffed entirely by volunteers statewide. Even parents of Saniyah’s former classmates have graciously volunteered their time.
Partner organizations include the City of Seaford (job and life skills training), several churches, Delaware’s REACH program for early childhood professionals, local school districts and PTAs. RunSaniyahRun has worked with other local organizations dedicated to special needs, such as Children’s Beach House, Autism of Delaware and Special Olympics.
Local businesses have donated goods and services, such as wood pellets for heating from Ace, State Farm (holiday gift drive), cleaning services by Home Assist Pro, and home maintenance and mechanical services from Nailed It Construction.
Some of the ways volunteers can directly help parents include:
- Transportation to multiple appointments or school
- Light housekeeping and meal prep
- Personal assistance: scheduling, shopping
- Lawn care
- Automotive care and filling gas tanks as donation
- “Respite care,” to give parents valuable personal time or care for siblings
Professional and in kind services:
- Grant writing
- Social media management and posting
- Fundraising and event participation
- Graphic design for flyers, etc.
- Food and other grocery donations
Gia Holden Ruffin’s inspiration…IS an inspiration. For her, it has been a spiritual journey, fueled by the gift of Saniyah’s beautiful life. “She was genuinely loved,” Gia says with admiration for her special daughter.
Consider how you and your friends and neighbors may spread the word and assist RunSaniyahRun and the families it serves.