Connect with us

News

Ssenkandwa battles cerebral palsy in spite of Covid-19 hitch

Published

on


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

Click to comment

Leave a Reply

Your email address will not be published. Required fields are marked *

News

Another blow as Judge throws out Kiggundu’s lawyer Muwema

Published

on

When court sat on Friday to hear the Kiggundu’s application to stop independent audit, he did not have a written application, and Justice Henry Adonyo instead ordered the plaintiff’s lawyer Fred Muwema to go make a written application seeking court to dismiss the audit and return to court on September 30 for a hearing of the application. But this adds more pressure on Kiggundu who is choking with the loans.

On 31 August, the judge ordered the Institute of Certified Public Accountants of Uganda (ICPAU) to carry out and independent audit into the accounts of the businessman and financial statements exchanged between the two parties, and present a report to court.

When asked by journalists why he has filed for an application seeking dismissal of the audit, Fred Muwema had this to say. “We are saying that let the validity and legality of those credit facilities (loans) be decided first before you can audit” He said.

The ruling on the application of the main suit to determine whether the businessman owes loan arrears to the bank is set for 5th October 2020, after which a date for hearing of the case will be set.

Background

Hamis Kiggundu through his companies Ham enterprises and Kiggs International (U) ltd sued DTB branches in Kenya and Uganda for deducting money from his accounts something which the bank contends and said they only acted as per the loan agreement of deducting 30% from Kiggundu’s accounts to recover the credit facilities rendered to him between February 2011 and September 2016

But Court documents filed by the bank in their defense shows that Kiggundu, between February 2011 and September 2016, was granted various credit facilities by the said DTB Banks.

First, via Ham Enterprises Limited, Kiggundu obtained a loan of $6,663,453 and another Sh2.5bn from the DTB (U) to finance his projects in the real estate business.

Later, according to New Vision, he got a facility worth $4.5m through Kiggs International (U) Limited from DTB (K) and mortgaged his properties, which include Plot 328 located at Kawuku on Block 248 Kyadondo, three plots that include 36, 37 and 38 on Folio 1533 Victoria Crescent II situated in Kyadondo and land on Makerere Hill Road on LRV 3716 Folio 10 Plot 923 Block 9.

Documents show that as of January 21, 2020, Kiggundu was in default on payment obligations of $6.298m on the loan facility of $6.663m, as well as sh2.885b on the demand overdraft facility of sh1.5b and the temporary demand overdraft facility of sh1b.

The banks say that Kiggundu was in default on the payment of another $3.662m out of a total loan facility of $4m and another $458,604 on a loan facility of $500,000, as of January 21, 2020.

The DTB consequently served him with a demand notice to either pay up or lose the assets that he submitted as collateral security. The bank threatened to attach a plot on Makerere Hill Road and other prime commercial properties.

Analysts says that Kiggundu’s lawyer is playing delaying tactics aimed at stopping the independent audit as ordered by the court earlier. Kiggundu had wanted court to believe his own audit of loan transactions, but that would amount to injustice to the banks that gave him money-DTB Uganda and DTB Kenya.

Continue Reading

News

Minister Rukutana charged with attempted murder, remanded

Published

on

By


The state minister for Labour, Gender and Economic Development Mwesigwa Rukutana has been remanded to Kyamugorani prison in Mbarara district.

Rukutana appeared before Ntungamo Grade One magistrate Nazifah Namayanja this afternoon from where he was charged with seven offences related to attempted murder, assault, malicious damage, and threatening violence.

Rukutana was captured in a video that went viral on social media showing him grabbing a gun from one of his bodyguards and started shooting at a vehicle belonging to supporters of his political rival Naome Kabasharira. At the time of the incident, Rukutana had just lost the Rushenyi country NRM flag to Kabasharira.

The prosecution alleges that on September 5, 2020, at Kagugu village in Ntungamo district, Rukutana and others still at large assaulted Julius Niwamanya and threatened to kill or injure him together with three others. The others are Stuart Kamukama, Dan Rwibirungi, and Moses Kamukama. 

It is also alleged that Rukutana also willfully and unlawfully damaged a motor vehicle registration number UAR 840X Toyota Rav 4 type which belongs to Moses Muhumuza.

According to the Judiciary public relations officer, Jameson Karemani, Rukutana has not taken a plea of these charges against him since they can only be tried by the chief magistrate who was not in court today.

As a result, the magistrate decided to send him to Kyamugorani, awaiting his return to court on Tuesday.      





Source – observer.ug

Continue Reading

News

Lira district headquarters closed over COVID-19

Published

on

By


Lira district headquarters have been closed after one staff tested positive for COVID-19 last week. 

On Monday morning, district staff were blocked at the gate with only the deputy chief administrative officer, his secretary and the receptionist allowed access to their offices. 

Paul Samuel Mbiiwa, the deputy chief administrative officer says that only heads of department will be allowed at the headquarters while the rest will work from home. He adds that the restriction will help to curb the spread of the virus.

“You see corona is not a joke. We have taken a step at fighting it and that is why you are seeing the staff outside. Even in my office here I do not want people to come if there is anything we can discuss on the phone.”

Francis Okello Olwa, a senior community development officer who doubles as the district spokesperson says that the entire district offices will be fumigated and closed for two days.

Health authorities in the district are planning to take samples from all the staff because they could have interacted with the one who tested positive. Currently, there are 19 COVID-19 patients under treatment at Lira regional referral hospital.     

On Sunday four health workers at the hospital tested positive for COVID-19. Dr Patrick Odongo, a senior medical officer at the hospital also succumbed to the virus.  





Source – observer.ug

Continue Reading

Trending