Barrister Festus Okechukwu Ogbu could never have imagined the profound hardships life had in store for him. The trials came in torrents threatening to overwhelm him.
Yet, instead of succumbing to despair, he is transforming his decades of travails into a ministry of hope; a mission dedicated to supporting others enduring similar suffering.
His journey of affliction began with the agonizing challenge of childbirth. For 15 years, he and his wife navigated a strenuous medical odyssey in pursuit of the fruit of the womb.
In 2006, after a decade and a half of fervent waiting, the Lord finally blessed them with a bundle of joy. She was healthy, promising, and possessed an alluring aura that naturally endeared her to all. They fittingly named her Praise.
Ogbu.described her daughter as a ‘brilliant, ambitious and coordinated person. She had no medical condition at birth..
For the first nine years, things looked bright, but then the shadow of sickness fell. Doctors delivered the first devastating diagnosis: Sickle Cell Disease (SCD).
While a serious blow, Ogbu noted the family wasn’t entirely taken aback, as recent medical advances offered SCD patients the possibility of a longer life. They successfully manage the crisis that came with SCD.
However, this was just the beginning. The young girl was later diagnosed with two other debilitating and rare autoimmune diseases that would ultimately defy medical science.
For ten grueling years, Praise was in and out of the hospital until she finally passed on in 2024.
The Medical Ordeal
Ogbu recounted that his daughter essentially became a “medical laboratory.” Her consultant paediatrician took up her case with fervent commitment, embarking on a series of intensive studies and medical investigations to save her life.
A deeply committed church man and member of the Archbishop Vining Memorial Cathedral, Ikeja, Lagos, Ogbu recalled his daughter’s condition growing dire around age 12, when she was expected to pass on. Yet, God granted her life a powerful extension.
The two additional diseases were identified as Systemic Sclerosis (SSC) and Juvenile Arthritis. According to the doctors, these conditions “emanate from the constituent of our body system depending on what provokes the composition of the organs.”
Systemic Sclerosis is a rare, chronic autoimmune disease affecting the body’s connective tissue. Systemic means it can affect the whole body, and Sclerosis means hardening or scarring (fibrosis) of tissues.
The disease which was diagnosed in Praise Ogbu during the COVID 19 season is characterized by the overproduction and accumulation of collagen, leading to:hardening and tightening of the skin.
It also caused damage to small blood vessels.dysfunction in vital internal organs (lungs, heart, kidneys, and gastrointestinal tract).
For ten years, ogbu said his daughter endured a relentless series of surgeries and medical interventions that exacted a terrible toll on the family. Her social and academic life for that period of her medical travail virtually collapsed.
The Second Attack: Juvenile Arthritis
The second condition, Juvenile Arthritis, also attacked Praise during the COVID-19 season. Just like SSC. “Juvenile arthritis left her bedridden at some point. She had to begin to learn how to walk again.
“It was not a palatable experience,” Ogbu stated. “As parents, we had to double our effort to give her the best. The attack on her immune system was devastating.”
He added that she suffered a host of inexplicable medical conditions, including persistent leg ulcers that took months to heal, constant fever, and severe body itching. These symptoms necessitated continuous trips to the hospital.
While commending the consultant pediatrician who handled her case for diligently managing her complex condition, Ogbu noted the severity of the illness.
He narrated cases, including a university graduate, who succumbed to these diseases within three months of diagnosis, confirming that the devastation is not unique to children.
A Foundation for Awareness and Support
”It is a devastating disease,” Ogbu said, “and that is why we are establishing a foundation to create awareness about the three diseases: SSC, SCD, and Arthritis. Presently, apart from Sickle Cell Disease which many know, the state of awareness for the other two is alarmingly low, perhaps only about 20 percent.”
The foundation, named after his beloved daughter, Praise, is set to be launched on Wednesday, December 3rd. Its primary focus will be to give support to patients under the age of 18 suffering from these three conditions.
”The foundation will create awareness and sensitize people on how to avoid being victims. Doctors will share their experiences and educate people on factors that predispose people, especially children, to these illnesses.”
The foundation’s payoff is STAYING ALIVE.
Ogbu recalled that his family had benefited greatly from the service of an NGO during his child’s travail while stating that he is being inspired to also extend that same love to those who are passing through this valley.
“Our foundation will organize regular forums for public education and will also donate drugs to hospitals to help patients in need.” He said.