With his high-spirited smile and infectious laughter, it is hard for one to wrap their mind around the fact that Loago Bagopi is suffering from a terminal affliction.The 21-year old native of Sefophe is suffering from a painful and rare genetic disease called Gaucher Disease (GD) but he is determined to live the best life he possibly can while he still has it.
GD is a rare inherited disorder caused by the body’s inability to make an enzyme, glucocerebrosidase, which breaks down fatty substances in the body. This leads to build up of these substances in many tissues of the body, including the bones, organs, and bone marrow.
The disease affects vital organs, and symptoms include developmental delay, seizures, dementia, blindness, enlarged liver and spleen, pulmonary and cardiac problems and bones that grow abnormally.
The disease is named after the French physician Philippe Gaucher, who originally described it in 1882.Bagopi’s health problem started when he was six years old and as he grew up and became an adolescent, the disease grew with him.
“I was very thin with a swollen tummy and I had to give up playing one of my favorite sports in the world, football, because my legs hurt.I was always tired and even if I had a small bump I would bleed excessively,” he explains.
The pains were not only in his knees, but also in the femur, hips, and back. His health problems became more frequent and aggressive and also meant he could be in bed for up to two months at a time.
With all that, Bagopi still managed to get a grade B for his junior secondary school leaving examinations, but unfortunately couldn’t go on with school because of his health problems.
It was only when he was 17 that he was finally diagnosed with Gaucher. He is one of the three confirmed cases of GD in the country.
“It was confusing for me that I was constantly going to doctors, constantly getting MRIs, x-rays, density scans,” recalled Bagopi. “I didn’t know what to look forward to”.
Once Bagopi was diagnosed with GD, the family received another shock.
There was nothing that doctors could do for him because the treatment is so expensive. At a cost of about P104 000 every two weeks, this condemns patients with rare diseases like Bagopi to a death sentence, according to Consultant Pediatrician at Princess Marina Hospital, Dr Joel Dipesalema.
“Cost of treatment is high because demand for medicines is low, and companies have to charge higher prices to recover cost,” he explained. Even more frustrating, he said, is the time patients take before they can be diagnosed.
Dr Dipesalema, explains, “A lot of patients are misdiagnosed and they go from one specialty to another, sometimes for years and even decades while they suffer from disabling complications of their disease.
It causes a tremendous sense of isolation and chronic pain, disability and loss of quality of life. So there is a huge burden of suffering that the patients experience on their path to having the correct diagnosis. The worst thing is not to know. Knowing what’s wrong, you have conquered more than half the battle.”
There are no specialized labs essential for diagnosis of most rare diseases in Africa and so all diagnosis are done in Europe. He said Gaucher disease occurs in three different forms, referred to as types 1, 2, and 3. Type 1, which Bagopi suffers from, is the most common form, accounting for 90% of known cases.
A delay in diagnosis or lack of treatment leaves the patient at risk of irreversible damage, which Dr Dipesalema said eventually leads to loss of body function and a painful death.Some of the biggest challenges when living with Gaucher, Bagopi said, include continuous fatigue.
“The pain comes and goes and sometimes makes it impossible to get out of bed, but the fatigue is always there and it is also immobilizing at times. A lot of times I’m just too tired to do anything. There is something about this type of being tired that is painful. It makes life impossible,” he said.
And then there are the constant stares he gets from the public every time he leaves the house because of his big stomach.“At one point I became really shy and didn’t want to mingle with anyone who was not family”. But he is over that now because, “being alive is too precious to waste it on obsessing what people think and say about you!”
With his eyes focused on enjoying his life the best way he can, Bagopi hopes that by sharing his story, other people battling the debilitating illnesses would be inspired to not focus on their negative circumstances and live their best lives.
GABS CITY REPAIRED
Located in the heart of Gaborone, Bontleng Primary School was one of the areas that were devastated by Cyclone Dineo some two years ago.
Among damages from the cyclone the school boundary walls were destroyed and some trees fell onto classrooms destroying the roofing, recalled Area Councilor, Olebogeng Kemelo. Today the school is among several developmental projects carried out by the Gaborone City Council (GCC). Maintenance work is going on, a new classroom block is coming up and roofs of classrooms that were destroyed by the storm winds have been replaced and reinforced with steel pipes.
The school will also receive rehabilitation of water reticulation and drainage along with other primary schools in the city in the financial year 2019/20. This is just one of the many developmental projects by the city council that are currently taking place around the city. Mayor of Gaborone, Kagiso Thutlwe said on Tuesday during the Council Leadership and Management tour of projects that they have realised that often times councilors discuss projects only in Council Chambers and never get an appreciation of the work on the ground.
According to Thutlwe the projects have been funded from the Economic Stimulus Programme (ESP), Roads Levy and Constituency funding, as well as additional funds from China through the Ministry of Local Government and Rural Development. The council received around P60 million from the Roads Levy, P30 million from ESP, and P50 million for the five constituencies within the city, while the donation from China through the ministry was about P15 million. “We are sampling a few projects from each of the funding mechanisms, some projects are funded from ESP, some from Roads Levy and some from Constituency funding,” Thutlwe said, adding, “Generally all projects are going on well.
“We had hiccups at the beginning of some projects like paving of roads that did not go well because of issues of capacity, but we are now satisfied with progress and contractors and there is close monitoring.” Some of the visited sites include the Shashe road in Gaborone South that was done under the Roads Levy for around P5 million, maintenance of primary schools around P600 000, storm water drainage around P600 000, walkway in Mosekangwetsi and Khuduga in Bonnington south around P600 000, ESP project in Khuduga primary school for around P20 million. Other projects include; recreational park development, storm water drainage in Old Naledi, construction of Kgomokasitwa Road, street lights and flood lights, maintenance of SHHA offices, Block 10 underdeveloped plots, Bosele primary school, Block 3 recycling centre and development of clinic in Maruapula.
WHO POISONED THE CHILDREN?
They were staying in Bontleng, Gaborone with their mother, father and aunt. According to their aunt Agnes Selato, their father Onalethata Moreomongwe had on February 27, cooked them rice soup and beef and left some in the pot, which he put in the fridge.
She says that the following day, the father told the children to eat the leftovers alone and that she – the aunt, should eat bread. “The girl wanted to refuse to eat but since she was coming from school and hungry, she ended up eating. I also ate with them,” she says. She however says that around 11pm, she and the children fell sick. “They had diarrhoea and were vomiting. Their body temperatures were high. I also experienced dizziness and started throwing up,” she says.
Selato says that the father decided to go out with his friend around midnight, ignoring that they were not feeling well. All the while, the children’s mother Kamogelo Selato was on a night shift at Engen filling station in Nkoyaphiri. It was when Kamogelo arrived around 7am that the children were taken to Bontleng clinic. The mother says that she went and looked for their father who came and drove them to the clinic.
The aunt however says she was feeling better. “Upon arrival at the clinic, we were quickly taken to Princess Marina Hospital where nurses sent me back home to call their father for questioning.
“When we got to the hospital, the boy had already been moved from Emergency to Intensive Care Unit. The girl was admitted at the Children’s ward and we were told she was feeling better,” says the aunt. As they were still waiting at the hospital around 8pm, they were informed that both children had passed on. She and Moreomongwe have since been interrogated by CID officers. “They took uncooked rice and cooked rice for testing.
They also took the pot that was used. But again after post-mortem that was conducted last Wednesday, the police asked them about a spray used in the house that could have affected the children’s respiratory systems. “I told them that the father had confided in his friend that he had brought spray from his workplace to kill cockroaches in the house. He actually sprayed the house at one point,” she says. Selato brought clothes in a plastic bag belonging to Kamogelo that had a strong smell of a chemical and told The Midweek Sun team that it was the one used by Moreomongwe.
The children’s mother says that she suspects foul-play as the children’s father did not bring money he claimed from their insurance. “His behaviour is suspicious. He took their death certificates for insurance claims but did not bring not even 1 Pula. “He went and bought himself a smartphone and created a fake Facebook account to tarnish my name that I killed my children,” she says, talking about circulating Facebook post that a mother has poisoned her children with rice. She says that even though the boyfriend’s family brought four goats and a sheep, the issue of insurance money that never helped at the funeral had angered her. “I buried my children alone, from my own pocket. But again I’m not surprised because I hear he was seen on Sunday at the graveyards with bottles at my children’s tombs,” said the 30 year old.
Kamogelo laments her relationship of seven years, saying her boyfriend had turned her into a punching bag. “He lives with me in my house but he abuses me. The whole furniture is mine and I pay rent, but he is abusive.
‘I’m done with him,” she says, adding that he had alienated her son as he found her already with him. She says that police should arrest him for killing her children. Kamogelo’s mother Matshidiso Selato also made a plea to the police to arrest Moreomongwe pending investigations. She says that they should kick him out of Kamogelo’s house and bring the keys to Molapowabojang. “In 2016, he nearly killed her. He abuses her.
Now that he has killed my grandchildren, he is going to kill my daughter,” she says angrily, adding that police should torture Moreomongwe so that he can tell the truth. Great grandmother Kebabope Mothibi blames the police for not arresting Moreomongwe, stating that he was going to kill Kamogelo. Great grandfather Kehetamang Modibedi says that he does not want Moreomongwe. “What had joined him with my granddaughter is gone and he is behind it. Now, they share nothing. I don’t want to see him,” he says.
In response, Moreomongwe, 27, blames the children’s aunt for their death. He denies having cooked rice for them and says it was actually Agnes who did. “I only took two spoons. Sejeso seo se ne se lebagane nna. Ga ampatle,” he says, implying that the poison had targeted specifically him. He explains that the sister did not want to leave them in peace as a couple, and that she had overstayed two months they had given her in their rented room.
He adds that he was also put on a drip at Bontleng clinic after the incident. Moreomongwe reveals that his girlfriend’s mother does not like him and had long wanted them to part ways. “She is a big problem in our relationship, but her daughter and I are fine. Even if she listens to them and dumps me, it’s alright, but I will always love her. I leave them with Isaiah 66 and they’ll know because we’re both ZCC members,” he says. Urban Police station commander Superintendent Masego Majaha says they are still waiting for the doctor’s report. She said they had taken the food to the lab for examination.
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