Raising two sickle cell warriors: A mother's journey of resilience and hope

Rael Achieng is a mother raising two children living with sickle cell disease.

She has had to navigate frequent hospital visits, daily medication, emotional struggles and financial challenges.

Her story, together with insights from Dr. Kibet Shikuku, highlights the realities of living with sickle cell disease, the importance of early diagnosis and the need for greater awareness and support for affected families.

Rael explained that both of her children take hydroxyurea every day to help manage the condition.

However, accessing the medication is not always easy, as there are times when it is unavailable. Because of the daily treatment, the children attend monthly clinic appointments and receive routine vaccinations to help protect them from serious infections.

She opens up about the day she discovered that her first child had sickle cell disease. Determined to understand the condition, she took it upon herself to learn as much as she could about it.

When her second child was eight months old, she began noticing familiar symptoms, including swollen hands, chest pain and swelling.

She took the child for medical tests, which confirmed that the baby also had sickle cell disease.

The diagnosis left her heartbroken.

"Feeling ya kuwa na mtoto mwingine naskia vibaya ukiona uchungu mtoto wako anapitia kama kuumwa na chest, inabidi uende hospitali."

The emotional and physical demands of raising two children with the condition at times became overwhelming.

"Kuna wakati nilitamani kutoroka watoto wangu wenyewe kwa sababu ya kwenda hospitali kila saa. Ilibidi niachane na kazi nilikuwa nafanya. Kama huyu ni mgonjwa, huyu mwingine ni mgonjwa," Rael said.

Despite the challenges, Rael continues to find hope by seeing other sickle cell warriors grow up and live fulfilling lives. She said this reminds her that her children can also have a bright future with proper care.

She also spoke about the stigma surrounding sickle cell disease, noting that some families face discrimination and hurtful remarks.

According to Rael, some people wrongly believe that children living with the condition are cursed or will never grow and thrive.

Dr. Kibet Shikuku explained that sickle cell disease is an inherited blood disorder that requires lifelong care and regular medical follow-up.

He noted that when a woman living with sickle cell disease becomes pregnant, doctors usually stop hydroxyurea because of the potential risks it may pose to the developing baby.

Dr. Shikuku also explained a treatment known as red cell exchange.

"It means that we remove one in exchange for something else. We can take blood from a patient with sickle cell, pass it through a machine, remove the sickled red blood cells and replace them with healthy ones," he explained.

According to the doctor, supporting people living with sickle cell disease goes beyond medical treatment.

He encouraged members of the public to donate blood regularly, noting that many patients depend on blood transfusions.

He added that bone marrow transplantation is also a treatment option for some patients. 

As Rael continues raising her two children, she hopes that greater awareness, improved access to treatment and an end to stigma will make life easier for families living with sickle cell disease.