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Ssenkandwa battles cerebral palsy in spite of Covid-19 hitch

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For James Ssenkandwa, the lack of adequate knowledge about cerebral palsy and how to handle people with the condition has caused untold psychological stress to families with people suffering from it.

Over the past months, the situation has been compounded by the Covid-19 restrictions, something that prompted him to create a response programme for people living with cerebral palsy and autism in Kampala, Wakiso and Mukono districts, writes Sadab Kitatta Kaaya.

What drives a mother to view death as the only reprieve for her child, one she is willing to even personally deliver? Nothing, most mothers will vehemently argue; but for one mother, cerebral palsy pushed her to that edge that she is not proud of. Lack of information, inadequate medical care and social stigmatization, all compound the challenges parents of children born with cerebral palsy face.

Anna Maria (not real name) received the blunt force of them eight years ago when she was tempted to take her son’s life, thinking that would end his misery.

Anna Maria’s son was born with a yellowish skin. At three days, he got a fever that kept them at Mulago hospital for about three months before they were discharged to return home at Lugoba-Kazinga in Kampala’s Kawempe division.

The days that followed presented the worst experience for any mother – more so, a low-income one. Without enough provision, she lost all hope and the best she could think of at the time, was to end her son’s life by giving him an overdose of drugs.

She, however, could not withstand the agony of seeing her son die at her hands and thank goodness, she immediately made him to vomit the drugs she had just administered to him.

Eventually, through her numerous visits to Mulago hospital, she learnt that her son has ‘CP’ – cerebral palsy, a neuro-developmental condition comprising a group of permanent disorders of movement and posture that are attributed to non-progressive disturbances of the developing foetal or infant brain.

This was just one of the many testaments Ssenkandwa, the director of Cerebral Palsy and Autism Renaissance Organization (CPARO), found during documentation of cerebral palsy cases in Kawempe suburb last week.

With funding from the Queen’s Commonwealth Trust (QCT), Ssenkandwa’s organization has been implementing a Covid-19 response programme for people living with cerebral palsy and autism in Kampala, Wakiso and Mukono districts.

According to the Centres for Disease and Prevention Control (CDC), a US government agency, symptoms of CP vary from person to person. A person with severe CP might need to use special equipment to be able to walk, or might not be able to walk at all, and might need lifelong care. On the other hand, a person with mild cerebral palsy could walk a little awkwardly, but not need any special support.

DAMNING STATISTICS

Angelina Kakooza-Mwesige, Hans Forssberg, Ann-Christin Eliasson and James Tumwine in their April 2015 research paper titled: Cerebral palsy in children in Kampala, Uganda: clinical subtypes, motor function and co-morbidities, note: “Despite lack of reliable information on the prevalence of CP in Uganda, there is reason to believe that this condition is significant in view that for every 1,000 live births in Uganda, approximately five children do not live to their first birthday and four women die during pregnancy and its related complications.”

The CDC notes that besides having problems with movement and posture, many of the people with CP suffer from conditions such as intellectual disability; seizures; problems with vision, hearing, or speech; changes in the spine (such as scoliosis); or joint problems (such as contractures).

CP has been classified in four types, according to the main types of movement disorder. First is spastic cerebral palsy which affects about 80 per cent of people with CP. People with this condition have stiff muscles, especially in the legs, which results into awkward movements.

The second type is dyskinetic cerebral palsy. People with this condition have problems controlling the movement of their hands, arms, feet and legs, finding it difficult to sit and walk. The movements are uncontrollable and can be slow and writhing or rapid and jerky. Sometimes the face and tongue are affected and the person has a hard time sucking, swallowing and talking.

This is the condition that Mariam Nabukenya’s nine-year-old son suffers from.

“To sleep, I have to give him a sleeping pill, and feeding him is a hustle,” said the resident of Lugoba-Kazinga, Kawempe.

The third type is ataxic cerebral palsy, which causes loss of balance and coordination. People with this condition are unsteady when they walk, and tend to have a hard time with making quick movements.

Some people have symptoms of more than one type of CP – a condition termed as mixed cerebral palsy. The most common type of mixed CP is spastic-dyskinetic CP.

MARGINALIZED

People with cerebral palsy are among the most marginalized persons with disabilities in Uganda since the condition is not largely recognized by national policies and statistics as a major category of disability.

Much as the seven-year-old daughter of Oliver Mugalu, another resident of Lugoba-Kazinga, does not have any speech impairments, she has failed to find a school in her neighbourhood that can enrol her.

“I wanted to take her to school but the schools around declined to enroll her because of her condition yet she doesn’t have speech impairment,” Mugalu said.

It gets worse when children with CP want to play with other children. “They don’t freely associate with children with CP because society has taught them [the regular children] to look at those with CP as outcasts,” says Nabukenya.

This has taught parents to keep their children indoors, said Zulaika Nansubuga, a mother to an eight-year-old son suffering from CP.

“The stigma is too much and it has made some parents to look at their children as a problem,” said Nansubuga, who also blames this to lack of information about the condition. Worryingly, Lugoba-Kazinga area had more than 10 children with cerebral palsy.

Ssenkandwa says that the lack of adequate knowledge about CP and how to handle people with the condition has caused untold psychological stress to families with people suffering from CP.

“Having adequate knowledge would help them to cope with the demands of taking care of children and adults with cerebral palsy as well as ensure that their rights are not violated,” Ssenkandwa said.

RAY OF HOPE

“Most people with CP and autism don’t have access to medical care and other social amenities. Most drugs are expensive and unavailable at most health units, especially in rural areas which affects their social, psychological and physical wellbeing,” Ssenkandwa said.

It does not stop at medical care, said Eva Nakimera, a mother of three, “It is also too expensive to feed children with CP as they require a special diet given their compromised immunity.”





Source – observer.ug

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Charles Mbire gains $1.2 million as stake in MTN Uganda rises above $51 million

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Ugandan businessman and MTN Uganda Chairman Charles Mbire has seen the market value of his stake in MTN Uganda surge above $51 million in just two days, as the share price in the leading teleco company increased by a single digit.

The single-digit bump in the share price caused the market value of Mbire’s stake to gain UGX4.42 billion ($1.24 million) in less than two days.

The million-dollar increase in the value of his stake came after Uganda’s largest telecom company delivered the country’s largest-ever IPO through the listing of 22.4 billion ordinary shares on the Uganda Securities Exchange (USE).

Upon completing the largest IPO in Uganda’s history, MTN Uganda raised a record UGX535 billion ($150.4 million) from the applications that it received for a total of 2.9 billion shares, including incentive shares.

As of press time, Dec. 7, shares in the company were trading at UGX204.95 ($0.0574), down six basis points from their opening price this morning.

Data gathered by Billionaires.Africa revealed that since the telecom company registered its shares on the Ugandan bourse on Mon., Dec. 6, its share price has increased by 2.5 percent from UGX200 ($0.056) to UGX204.95 ($0.0574) as of the time of writing, as retail investors sustained buying interest long after the public offering.

The increase in the company’s share price caused the market value of Mbire’s 3.98-percent stake to rise from UGX178.45 billion ($49.96 million) to UGX182.86 billion ($51.2 million).

In less than two days, his stake gained more than UGX4.42 billion ($1.24 million).

In a statement after the successful listing of MTN Uganda’s shares, Mbire said the IPO shows the confidence that Ugandans and other investors have in the company, its brand and strategic intent.

“We commend all the regulators for their support in our work to become a USE-listed company and to comply in a timely manner with the listing provisions of the national telecommunications operators’ license,” he said.

Steady but sure-MBIRE who is the biggest investor on Ugandas Stock exchange with stocks valued at more than $55 million is laughing all the way to the bank after MTN declared the latest dividend payout.He has steadily grown his business empire which is believed to be more that $350 million (debt free).

Steady but sure-MBIRE who is the biggest investor on Ugandas Stock exchange with stocks valued at more than $55 million is laughing all the way to the bank after MTN declared the latest dividend payout.He has steadily grown his business empire which is believed to be more that $350. ( debt free).

He is into communications-revenue assurance-cement-distribution-oil services-real estate-oil exploration and logistics.

Source: Billionaires Africa

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2-year-old dies at Arua hospital as nurse demands Shs 210,000 bribe

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A two-year-old child died at Arua Regional Referral hospital after a nurse, Paul Wamala demanded a bribe amounting to Shs 210,000 before carrying out an operation. 

The incident happened on Saturday, after Aron Nabil, a two-year-old child was referred to the hospital for an operation after he was diagnosed with intestinal obstruction, a medical emergency caused by a blockage that keeps food or liquid from passing through the small intestine or large intestine.

According to the relatives of the child, Wamala allegedly asked them to initially give him Shs 30,000 to buy medicines to commence the procedure. He however returned shortly asking for an additional Shs 180,000 from the relatives.

Emily Adiru, a resident of Osu cell, in Bazar Ward, Central Division, and a relative of the child says although they paid money to Wamala, he abandoned the child without carrying out the operation. According to Adiru, Wamala later refunded Shs 200,000 through mobile money, after she threatened to report him to the police.

“They told us this boy needs an operation which was supposed to be done in the morning on Sunday at around 7 am. They took him inside there, some doctor came from the theatre, he called one of us and said, we should pay Shs 70,000 for buying medicine to start the operation. We paid the Shs 30,000 [but] after paying the Shs 30,000, after some minutes, the same man came and opened the door and called us again, and told us we should pay another Shs 100,000. We also paid the Shs 100,000 and we thought it is finished. We were outside there waiting for our patient to come out [but] then this man came back again and said we should pay another Shs 80,000,” said Adiru.

Although the operation was later carried out after a 7-hour delay, the child didn’t make it, and relatives attribute the death to negligence. Miria Ahmed, a concerned resident wonders why such incidents have persisted at the facility which is supposed to service the citizens.

“Is the problem the hospital, is it the management or it is the human resource that is the problem in the hospital? A small child like this you demand Shs 210,000 for the operation? Well, if the money was taken and the operation is done, I would say anything bad but this money was taken and the small boy was abandoned in the theatre,” she said. 

When contacted Wamala refused to comment on the allegations. Dr Gilbert Aniku, the acting hospital director says that the hospital will issue an official statement later since consultations about the matter are ongoing.

Arua City resident district commissioner, Alice Akello has condemned the actions of the nurse saying she has ordered his arrest so as to set an example to the rest. The case has been reported to Arua regional referral hospital police post under SD reference No:05/30/05/2022.



Source – observer.ug

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Mexican president’s Mayan Train dealt new legal setback | Tourism News

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Activists say the planned tourist train will harm the wildlife and natural features of the Yucatan Peninsula.

Mexican President Andres Manuel Lopez Obrador has been dealt the latest setback to an ambitious plan to create a tourist train to connect the country’s southern Yucatan Peninsula.

On Monday, a judge indefinitely suspended construction on a portion of the project, known as the Mayan Train, saying the plans currently do not comply “with the proceedings of the environmental impact evaluation”.

The ruling follows a legal challenge by activists who said they were concerned the 60km (37 mile) portion of the train that would connect the resorts of Playa del Carmen and Tulum would adversely affect the area’s wildlife, as well as its caves and water-filled sinkholes known as cenotes.

The original plan for the disputed section was for an overpass over a highway, but the route was modified early this year to go through jungle at ground level.

The federal judge cited the “imminent danger” of causing “irreversible damage” to ecosystems, according to one of the plaintiffs, the non-governmental group Defending the Right to a Healthy Environment. In a statement, the group said that authorities had failed to carry out the necessary environmental impact studies before starting construction of the section.

Lopez Obrador had announced the ambitious project in 2018, with construction beginning in 2020. The roughly 1,500km (930 mile) cargo and passenger rail loop was presented as a cornerstone of a wider plan to develop the poorer states and remote towns throughout the about 181,000sq km (70,000sq mile) Yucatan Peninsula.

The railway is set to connect Caribbean beach resorts with Mayan archaeological ruins, with authorities aiming to complete the project by the end of 2023. The plan is estimated to cost about $16bn.

The project has split communities across the region, with some welcoming the economic development and connectivity it would bring. Others, including some local Indigenous communities, have challenged the project, saying it could not only disrupt the migratory routes of endangered species, including jaguars, tapirs and ocelots, but could also potentially damage centuries-old Mayan archaeological sites.

The National Fund for the Promotion of Tourism, the government agency overseeing the project, has said that it expects to “overcome” the latest challenge and that work should continue after an environmental impact statement is finalised. It said the Environment Ministry was currently reviewing its environmental application for the project.

For his part, Lopez Obrador has insisted the railway will not have a significant environmental effect and has accused activists of being infiltrated by “impostors”.



Source – www.aljazeera.com

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