‘I never want anyone to forget Brenya.’
Petrina Onwuemeli, of Ormond Beach, said she went to the chapel in the hospital after her son was born and had a conversation with God.
Her son, Brenya, was born in 2001 with Trisomy 18, a genetic disorder that rendered him unable to speak or walk. Onwuemeli was told that less than 10% of those diagnosed with the disease live to see their first birthday. Doctors, nurses and others told her she should turn him over to hospice care.
That’s when she went to the chapel, she said recently.
“I said, if I can keep him here with me, I’ll do whatever it takes to take to take care of him,” she said. “And yes, it was a struggle.”
During Brenya’s life, he had seizures and was on a ventilator through a tracheotomy 24 hours a day.
He defied the odds and lived for 10 years. Onwuemeli was working two jobs, going through a divorce and finding her way through the social services and medical systems. She had the assistance of case workers and home health care.
But, like many caregivers, she feels that she could have done more.
“We had a happy life but I always felt that as a mother I didn’t do enough,” she said. “That’s why I do what I do now. l I never want anyone to forget Brenya. When I can help a family or someone in need, I feel like I’m doing it for him.”
On July 16, she had a “Brenya’s Love” civic event at the Yvonne Scarlett Golden Community Center in Daytona Beach. Attendees were able to pick up care packages of medical and cleaning supplies, diapers, hygienic items, etc. Order of Eastern Star, where she is a member, helped collect the items. She knows that supplies are a problem, because when Brenya was alive, Medicare did not pay for incontinence supplies, for example. It does now, Onwuemeli said, but too late for her and Brenya.
There were also tables at the event staffed by organizations such as Halifax Urban Ministries, Easter Seals and home health agencies. Onwuemeli hopes to start a coalition of providers, so those with medically complex children will know where to turn. When she was caring for Brenya, there were no local daycares for medically complex children, but now there are.
Onwuemeli said while caring for Brenya she often suffered in silence, and now encourages others to speak out and ask for help. She was not aware of resources that were available.
The big, little sister
Onwuemeli’s stepfather, the Rev. Benjamin F. Smith, of DeLand, said that Brenya was a loving child who enjoyed life. He smiled a lot, especially when around his sister, Taylore Smith, who was born a year later.
“She was very protective of him,” Smith said.
Onwuemeli said they called Taylore the “big, little sister.”
“As she got older, she could do everything for him,” she said. “It was a great relationship. It was really beautiful.”
He smiled before Taylore was born, Onwuemeli said, but as she got older she brought the smiles from Brenya much more often.
Taylore said the years of taking care of Brenya were good years, even though there were “rocky” times.
“He was my big brother,” she said. “He fought hard for his life. He had a beautiful heart and spirit.”
‘Brenya was a blessing’
Onwuemeli grew up in a home with two professional parents and they never wanted for anything, she said. She got married and had Brenya at age 24.
“I was spoiled, really,” she said. “I never had to do anything, and then God gave me Brenya.”
She had always believed in God, but sometimes struggled with faith.
“Having him increased my faith and my strength,” she said. “Brenya was a blessing.”
Duiring that time, she promised Brenya and Taylore that she would finish her education.
After Brenya died, she got a degree, and now works as a case management worker for Halifax Urban Ministries.
“I’m keeping the promises I made before Brenya passed away,” she said.
She plans to have another event next year. Email [email protected].
“Having him increased my faith and my strength.”
PETRINA ONWUEMELI, on her medically-complex son
“He had a beautiful heart and spirit.”
TAYLORE SMITH, on her brother, Brenya