They boost sickle cell survivors’ chance at life by helping them stay in school

Aliyu Bakama was born with sickle cell anaemia, and he still feels sad about losing his three siblings to the same disease.

But that’s not all. Bakama also went through the tough experience of losing his parents. His mom passed away in 2010, and his dad in 2012. This has been really hard for him.

Even with all these difficult times and the challenges of dealing with sickle cell anaemia, Bakama stayed strong and kept going in his education. He started in primary school in Potiskum Local Government Area of Nigeria’s Yobe State, where he grew up. In 2018, he graduated with a degree in Physics from the University of Maiduguri.

“I’m a survivor of sickle cell because I have been consistent with taking medications that alleviate the pains and symptoms and also living happily with my other four younger siblings, where I take care of all their responsibilities,” Bakama said.

Following his graduation from the university, Bakama and his friend Musa Malut Adam, who today both regard themselves as survivors of the disease, embarked on a mission to support victims of sickle cell disease by initiating the A5 Sickle Cell Support Initiative, a non-profit organisation dedicated to enhancing the lives of children with sickle cell disease by providing them with access to quality education.

“Being sickle cell survivors, we knew exactly what and how it feels for someone to live with the disease. So I love helping people, and it gives me satisfaction to take people out of agony and hardship. More especially patients with sickle cell disease and persons with disabilities,” Bakama admitted.

A study showed that Nigeria is the most sickle cell endemic country in sub-Saharan Africa, with between 2% and 3% of the total population affected.

Sickle cell disease had taught him so many lessons, including physical pains and stigmatisation coupled with the loss of loved ones, but Bakama has been a strong man who refused to let such circumstances bring him down.

“I was also faced with discrimination and stigmatisation amidst my contemporaries, and they often addressed me as “Smally” because I’m tiny in stature,” Bakama recounted.

Today, Bakama is a lecturer at the Federal College of Education, Technical, Gombe and married with a child. “It was a height many never expected me to reach as a victim and survivor of sickle cell disease,” he noted.

Educating children with sickle cell disease

Relying on self-funding and online fundraising campaigns, Bakama and his team have initiated a project with a focus on providing educational opportunities for individuals affected by sickle cell anaemia. They believe that their community discriminates against these individuals, especially in the realm of education.

According to Bakama, there is a prevalent myth that those with sickle cell anaemia cannot succeed in life. Additionally, many parents of these children are financially strained due to the nature of the disease, frequent hospital bills, and medication expenses. As a result, these individuals require support to stabilise their living standards and pursue education.

The project, operating in Potiskum, has significantly impacted victims and survivors of sickle cell anaemia by addressing issues of discrimination and stigma. It serves as a platform that grants these children the right to access education, regardless of their health condition.

While the project continues to facilitate the enrollment of children in primary schools throughout Potiskum, it has already enabled seven pupils to attend school consistently without facing discrimination.

The hope restored

Fatima Usman Zamani is a mother of two children, Adamu and Hauwa, who were born with sickle cell anaemia, and with efforts from the initiative, her children are enrolled at Mai Adiko Primary School Potiskum.

“Since these children were born, I have been struggling with getting them medications, which was why I couldn’t afford to enrol them in school. But with this opportunity, I hope they will get to access education like other children,” Usman told Prime Progress.

There is also Aisha Sa’idu, a mother of triplets Hassan, Hussaini, and Abdulhamid, who were all born with sickle cell anaemia.

Sa’idu was also struggling with getting her children’s medications when she got in contact with the initiative in one of their community outreaches, and through their help, she enrolled Hassan and Hussaini at Arikime Primary School Potiskum.

“I’m happy about this intervention and still hoping that Abdulhamid will also get enrolled someday,” Sa’idu expressed.

Despite the positive testimonies, the initiative faces challenges, primarily a shortage of sufficient funding and collaborations to expand its projects beyond Potiskum. Nevertheless, Bakama has a plan in place.

“I want to take the organisation to international standard and leave behind a legacy for the existing and upcoming generation, and also make it keep running non-stop even when I’m not there,” he concluded.