Father unveils foundation on sickle cell, others after daughter’s death

A grieving father, Festus Ogbu, has established a foundation in honour of his only daughter, Praise, who died in 2024 after battling Sickle Cell Disease, Systemic Sclerosis and Juvenile Arthritis.

To bridge the gap in public awareness, the family is launching the Praise Ogbu Foundation on Wednesday, with the motto ‘Staying Alive,’ aiming to support children under 18 suffering from SCD, SSC, and Juvenile Arthritis.

“The foundation will create awareness and sensitise 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,” a statement from the family read.

Ogbu said he is turning years of anguish into “a ministry of hope” after his daughter’s decade-long struggle with the three illnesses.

He recalled that Praise was born in 2006 after he and his wife endured 15 years of waiting.

“For 15 years, my wife and I waited. God blessed us with a beautiful, brilliant and coordinated child. We named her Praise,” he said.

Her first diagnosis, Sickle Cell Disease, came at age nine.

But the family faced a greater ordeal when doctors later confirmed two debilitating autoimmune diseases.

“My daughter became a medical laboratory technician. Her consultant paediatrician embarked on intensive studies to save her life,” he added.

According to him, Systemic Sclerosis was particularly devastating, causing tissue hardening, organ damage, and a cycle of surgeries and painful symptoms.

“It is a devastating disease,” he said, adding that the condition erased her social and academic life for years.

According to the Mayo Clinic, Scleroderma is a rare disease that hardens the skin and can affect blood vessels, organs, and the digestive tract.

While incurable, treatments can ease symptoms and slow progression.

Juvenile idiopathic arthritis is the most common arthritis in children under 16, causing joint pain, swelling, and stiffness.

Some cases can lead to growth problems or joint damage, but treatment helps manage symptoms and prevent complications.

Praise also developed Juvenile Arthritis during the COVID-19 period.

“Juvenile arthritis left her bedridden at some point. She had to learn how to walk again. The attack on her immune system was devastating,” he added.

He said the lack of public awareness worsens the plight of many families.

“Apart from sickle cell disease, which many know, the state of awareness for the other two is alarmingly low, perhaps only about 20 per cent,” he noted.

Ogbu said the foundation was inspired by the support his family once received from an NGO during their daughter’s medical battle.

“We benefited greatly during our child’s travail, and we want to extend that same love to those passing through this valley,” he said.

He added that the Praise Foundation will organise public education forums and donate drugs to hospitals to support patients in need.