How sickle cell anaemia robbed twin girls of their tender years

Sickle cell anaemia is a disorder that causes the red blood cells to be abnormally shaped and get stuck inside the blood vessels, making it hard to deliver oxygen throughout the body. This causes intense pain, leading to severe organ damage. One family shares how the disease reshaped their lives.

Monday June 9 2014

Patrick and Patricia Bwire feed the twins.

Patrick and Patricia Bwire (above) feed the twins. When the parents go to work, the two sicklers are left home alone. Extreme right is a picture of what the girls looked like at the age of two before they got sick. On the left hand side is Pauline Rofina Adong and on the right is Regina Petronila Apio. PHOTOs by ABUBAKER LUBOWA. 


The sound of compressed tiny cries spreads across one of the four walled rooms in the house owned by Patrick Bwire and his wife Juliet Patricia Bwire located in Namugongo, a township situated on the outskirts of Kampala.

Patricia sits on the bed placed strategically at the far back end of the room, feeding a child resting her head on her laps with brown porridge using a spoon that she scoops from a green cup.

From time to time, she keeps calling out her name, Rofina, in a sweet and affectionate manner. Obviously from her actions, it becomes clear that Patricia is tending to her daughter. On another bed placed on the right side of the same room sits a young girl who seems to be in her teens, feeding another one on the same content that Rofina is having.

The girl being fed is Regina and the one doing the feeding is Claire Faustina Nasirumbi, aged 14. The two are sisters.
You cannot miss the striking resemblance between the two girls Patricia and Nasirumbi are feeding after taking a closer look at them. “Do not get puzzled. The girls we are feeding are twins,” Patricia says.

Even as she replies very calmly, it is hard to imagine the kind of pain and suffering that she and her husband have gone through for the past years looking after these twins.
Just as they were beginning to enjoy their early childhood years, both Rofina Pauline Adong and Regina Petronila Apio, aged 10, were paralysed after getting a stroke caused by sickle cell anaemia. The first one to fall sick was Adong, who was only two years old at the time, and Apio followed when she was four years old.

History of the twins’ illnesses
Patricia recalls the day she first noticed Adong’s strange behaviour. “It was during the morning hours when I suddenly heard a cry from her bedroom. When I got there, I found her lying still on the bed. After I touched her body, I realised that the right leg and arm were stiff,” she says as tears gather in her brown eyes.

In a panic stricken state, she quickly took her to Zia Angelina Health Centre which is located within Namugongo trading centre.

A doctor who attended to Adong that day prescribed a cream to help relax her joints but when her condition did not improve a week later, the Bwires decided to visit a doctor at Nsambya hospital who later referred them to Mulago hospital.
At this stage, Adong’s left leg and arm had also stiffened. She had also completely lost her speech.

It was only after tests were carried out that it was confirmed that Adong was suffering from sickle cell anaemia, which had made her get a stroke that resulted into paralysis of all her limbs.

Probably because of the pain and discomfort that she felt, Adong cried throughout the night. This in the end would make it very difficult for the rest of the people in the house to sleep. The family spent a lot of money on getting her the best treatment with the hope that she would finally get better. Adong’s condition, however, just kept deteriorating.

As if this cross was not already heavy for the parents to carry, when the other twin, Apio, was four years, her limbs also started stiffening and eventually she lost her speech too. It was also confirmed that she had sickle cell anaemia after tests were done at Mulago hospital.

Seeking help
Since the couple needed more finances to take care of both girls, they visited Daily Monitor offices and requested for some sort of publicity regarding their daughters’ condition.
“We wanted a story written appealing to members of the public to give us any kind of monetary assistance to enable us take both of them for medical attention,” Patrick says.

Their request was granted and on May 10, 2012, a compassion article titled Eight-year-old twins battling Paralysis appeared in the Daily Monitor newspaper and the response from members of the general public was overwhelming. “Different individuals and organisations offered money, food and toiletries for the twins,” Patricia says.

Comprehensive Rehabilitation Services for Uganda (CORSU) also offered to give the twins free physiotherapy for six months. CORSU, a private non-profit and non-government organisation that mainly focuses on physical and visual impairment in children among other services provides specialised medical rehabilitation care, orthopaedic and plastic surgery.

How the parents cope
It has been almost two years now since the twins were offered assistance, but the girls’ progress has been slow in coming.
“Adong and Apio have not improved very much. Their limbs are still very stiff and they cannot talk,” their father says.
It is because of the twins’ inability to move their limbs that their parents have to carry them almost every other time.

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