October 3, 2019

Neighborhood Environment Watch Foundation (NEW) – SOCIETAL SERVICE

No nation is immune to the impacts of non-governmental organizations have been making around the globe and the states in Nigeria have not been left out of these impacts. These humanitarian outfits previously, presently and forever will remain on the pages of societal provisions.

With the motto “Committed to Environmental and Human Health” Neighborhood Environment Watch Foundation,(NEW) has thus far inspired positive change by creating sustainable human and environmental development for the benefit of communities, young persons, households and vulnerable population at the same time running advocacy for the development of equitable, sustainable human, environmental health systems and empowerment programmes that deliver services improving human developmental outcomes.

Founded in September 11^th, 1998, NEW is committed to the development of equitable and sustainable health systems, creating values and empowerment programmes amongst youth, women and promoting the human rights of children. NEW, moving ahead has contribute to the reduction and the burdens of HIV/AIDs, Malaria, Tuberculosis and Viral Hepatitis infection, promoting access to water, sanitation and hygiene practices, building capacity and promoting activities that reduce climate hazards, poverty, unequal access to resources, food insecurity and social segregation and the same time conducting research, advocacy, and evaluation with a focus on innovations in youth development environment and health systems.

The founder of the NEW foundation, Hon. Dr. Okezie Kelechukwu who continues to be a humanitarian said that agonies in his state spurred the establishment of the foundation to giving to the communities. Dr. Okezie added that 80 acres of reforested lands, 30,000 tree seedlings raised and planted, 200 community trained farmers on agroforestry, 7 trained youths on tree nursery operations and over 5000 members are now direct beneficiaries to one of the lord able projects tagged Reforestation of 80 Hectares of Degraded lands at Enyigba / Edda communities in Abakaliki LGA in Ebonyi state.

Dr. Okezie also recounted that 6,585 persons were reached with HIV prevention Interventions using the MPPI under the project called Comprehensive HIV Prevention and Behavioral Change Intervention for OSYs, TWs, PIs and women in Ebonyi State.

The third project which is community Awareness and practice of malaria control and prevention went round 84 communities all in the bid to reduce malaria-related morbidity and mortality amongst the most vulnerable target groups sensitizing them on the need of the usage of nets which has proven to cause a drastic reduction in health facility visits, reduction in maternal and placental malaria and low birth rate in Ebonyi State. This marked a massive turning point for the people of Ebonyi state as resounding testimonies were made by the beneficiaries.

It is should also be recalled that a hundred and five persons were drawn from various local government areas in Anambra South Senatorial District trained on budget processes at the grassroots, participatory budgeting, budget monitoring and tracking at the grassroots. This was solely observed to make people especially the youth become more inclusive in decision making in the society and the nation at large.

Hon. Dr. Okezie Kelechukwu who still remains in the school of humanity stated that Neighborhood Environment Watch will not stop watching the backs of members of the society, ensuring that lives are touched through the services NEW will continually render in every neighborhood in Ebonyi state.

July 28, 2019

Creating Awareness about Hepatitis on World Hepatitis Day

LOVE YOUR LIVER

A major global public health challenge, endemic in many parts of the world, with the highest prevalence in sub-Saharan Africa and East Asia, the Hepatitis B virus (HBV) infects more than 300 million people worldwide and is a common cause of liver disease and liver cancer. Viral hepatitis is the seventh leading cause of death globally, making it a silent killer and responsible for about 1.44 million deaths annually. Often times, many adults infected with the virus recover, but 5 to10 % are unable to clear the virus thus becoming chronically infected.

Hepatitis is an inflammatory condition of the liver, commonly caused by a viral infection. However, there are other possible causes of hepatitis; autoimmune hepatitis and hepatitis that occurs as a secondary result of medications, drugs, toxins, and alcohol. Autoimmune hepatitis occurs when the body makes antibodies against liver tissue while Hepatitis B is an infection caused by the hepatitis B virus. The virus is found in the blood and body fluids of an infected person and could be spread through unprotected sex with an infected person or sharing sharp objects with infected persons.

In 2015, hepatitis B resulted in 887,000 deaths, mostly from complications and 2,850,000 were recorded to be newly infected in 2017. About two-thirds of patients with acute HBV infection sometimes have a mild illness that usually goes undetected, until the person becomes seriously ill from the virus. While the hepatitis B virus can survive outside the body for at least 7 days, it has an incubation period of up to 75 days and maybe detected within 30 to 60 days after infection which by then could develop into chronic hepatitis B with symptoms comprising, a general sick feeling, diarrhea, aches and pains, high temperature, loss of appetite, lethargy, abdominal pain, jaundice and dark urine.

The 5 types of viral hepatitis include hepatitis A, B, C, D, and E. Hepatitis A is always an acute, short-term disease, Hepatitis E is usually acute but can be particularly dangerous in pregnant women. Causes of noninfectious hepatitis include alcohol and some toxins.

In Africa, chronic viral hepatitis affects over 70 million Africans; 60 million with Hepatitis B and 10 million with Hepatitis C. Sadly, the disease affects the most youthful and productive Africans, causing catastrophic financial liability in its treatment.

Nigeria is one of the countries with the highest population in the world; with children and young adults constituting the bulk of these numbers. It is important to note that the commonest cause of liver disease in Nigeria is Hepatitis B and although pregnant women are generally considered at a lower risk for HBV infection, the rate of infected pregnant women as high as 11%, have been reported in southern parts of the country. In 2016, the Federal Government affirmed that over 22.6 million Nigerians lived with Hepatitis, with about 30% unaware of their status.

It is most important that knowledge around the Hepatitis disease and how best to eradicate it is shared by everyone. World Hepatitis Day is one of eight official global public health campaigns marked by the World Health Organization and the theme for this year’s World Hepatitis Day is ‘Invest in Eliminating Hepatitis’, highlighting the need for governments around the world to take active steps towards combating the virus.

Coordinating a global response to hepatitis has paved way to finding cure for hepatitis C and treatment and vaccine for hepatitis B. Interestingly, vaccine against hepatitis B has been available since 1982 and the vaccine is 95% effective in preventing infection and the development of chronic disease and liver cancer, chronic hepatitis B infection can thus be treated with medications including safe and effective vaccines ensuring millions do not suffer anymore. Because Hepatitis affects everyone, everywhere and much closer than we think, as humans, let us begin to love our livers so we could have healthier and longer lives.

Although, Nigeria has embarked on a journey to finding a cure by registering hepatitis-related cases, adopting universal vaccination, screening all donated blood, implementing policies aimed at prevention of mother to child infections and ensuring that all infants receive the hepatitis B vaccine immediately after birth, preferably within 24 hours, there is still a lot more to be done.

For you to love your liver and be able to live longer, you must know, prevent, test and be sure to treat Hepatitis. While care is aimed at maintaining comfort and adequate nutritional balance, including replacement of fluids lost from vomiting and diarrhea, it is important to encourage prevention through vaccination.

June 23, 2019

Profiling Elijah’s Widows and Orphans Mission International on International Widows’ Day.

Elijah’s Widows and Orphans Mission International (EWOMI) was established in 2014, to alleviate the sufferings of widows, empower them to sustain their families and provide a better life for their children.

The mission started as a vision to work towards supporting government in the bid to put an end to extreme poverty, abuse, rejection and exploitation of the underprivileged in the society unto a sustainable life of comfort while motivating orphans to attain a greater future through skill acquisitions and qualitative education.

Elijah’s Widows and Orphans Mission International (EWOMI) is stepping in to the world of widows and their children, providing succor for them and championing their case, creating a positive outcome for them and their families through social and economic empowerment.

EWOMI currently provides vocational skills and financial assistance which include food, clothing and shelter to many widows and orphans in Abuja; a support which will help them become more productive members of the society.

For the widows who are often left behind, EWOMI calls on government for stronger legislation on the commemoration of International Widows Day.

June 23, 2019

Abandoned But Not Alone

Widowhood represents social death in several communities; the loss, a devastating blow – an understatement.

The death of a husband and father signals loss of stability and status for many families in Nigeria. In many households, the male figure often stands as a breadwinner and in cases where the wives do not have a source of their own, the husband would then be the sole provider such that when he dies, the family often feels something way beyond bereavement. His death robs his family of their financial and social standing and thus they suffer the most extreme forms of poverty, discrimination, stigma, physical, sexual and mental abuse.

For years, the term “widowhood” was associated to elderly retired females who had lost their husbands at some point in their lives and had decided to live out their golden years alone. Today, widowhood stares at us in a larger proportion as younger women are now becoming widows.

Statistics show that higher mortality rate among middle-aged men especially in comparison with lower mortality rate among their female counterparts, a prevalence of younger wives than husbands and so on are some of the reasons for the high number of widowhood among younger women today. Their children face horrors such as child marriage, illiteracy, forced labour, human trafficking, homelessness and sexual abuse.

The 2015 World Widows Report by the Loomba Foundation reveals an estimation of 258 million widows with 584.6 million offspring around the world and nearly one in ten live in extreme poverty. Together with their children, they are malnourished, exposed to diseases and subjected to extreme forms of deprivation. They experience targeted murder, rape, prostitution, forced marriage, property theft, eviction, social isolation and physical abuse. Another estimate reveals that about 1.5 million widows’ children in the world die before their fifth birthday.

To give special recognition to the situation of widows world over, the United Nations General Assembly thus declared June 23^rd International Widows’ Day. The day effects actions to raise awareness on and help widows and their children who suffer through poverty, illiteracy, HIV/AIDS, conflict and social injustice- highlighting the “Invisible Issues faced by these “Invisible women” in our society.

Widowhood practices have attracted global attention on violence against women. Sufficient evidence suggests that widows are severely affected financially, socially, sexually and psychologically.

Abuse of widows and their children constitutes one of the most serious violations of human rights and obstacles to development. Today, we hear that millions of widows endure all of these hardships for the sake of their children, just so they can keep them.

For their children, they want to do the unbelievable, the seemingly unattainable. This is the only thing they have (their dividend, their treasure) and so they want to hold on to them, providing them with the most basic needs, however little or insufficient even if they are far cry from luxury.

According to World Bank Group’s Women, Business and the Law 2016 Report, out of 173 countries, 90% have at least one law limiting women’s economic participation, including constraints on their ability to inherit or own land. Unmarried women live with their parents; married women belong to their husbands. Then we wonder who exactly protects the widows?

In Africa, widows are victims of all kinds of harassment and discrimination. After losing their husbands, widows may suffer double blow – (1) financial hardship and (2) accusation of witchcraft. While in the process, they are denied access to their husbands’ properties. Some callous culture and tradition even go all the way, demanding the widow to drink the water used in washing the dead husband’s body or to have sex with an in-law or a total stranger. It is that bad!

It is bad to the extent that women in several Nigerian communities dread the experience of widowhood. Research reveals that about 15 million widows in Nigeria are in dire need of every form of assistance, another report reveals that the number of widows in the North-East had sky-rocketed from 10,000 in 2013 to a higher figure due to insurgency.

Several widows find themselves homeless as their husband’s families may neglect them, confiscate properties owned by their late husbands because many have little or no education or skills , they suffer with their children.

In the bid to fend for themselves and their children, they face humiliation. They beg for food. Yes! It is that bad. Widows and their children sometimes go without good meals for days.

By all means they want to put food on their table, they want to pay their children’s school fees, they want to address their health issues, they want to maintain the roof over their heads and while at it, they meet countless obstacles. They are accused of witchcraft; they are also sometimes tagged “husband snatchers” even by their so-called close friends.

As a nation, we have a mandate to ensure widows are empowered and protected from abuse, from stigmatization, from humiliation and more so from financial hardship. With women becoming more educated, economically independent and aware of their rights particularly in the 21^st century, they become more immune to psychological stress and other extreme forms society make them go through. They are beginning to stand up for their rights by saying no to barbaric practices.

Providentially, reports reveal that The Nigerian Government already signed into law Violence Against Persons (Prohibition) (VAPP) Act, an act which is meant to protect citizens against various forms of violence, including negative practices against widows.

To this end, former UN Secretary General, Ban Ki-moon urges the world “We must erase the social stigmatization and economic deprivation that confronts widows; eliminate their high risk of sexual abuse and exploitation; and remove the barriers to resources and economic opportunities that constrain their future.”

March 25, 2019

Jaldhaara Foundation on World Water Day

At Jaldhaara Foundation, it is everything freshwater. Jaldhaara Foundation’s slogan ‘Quenching A Bigger Thirst Nigeria’ speaks volume on the essential need of water for all Nigerians.

With the foundation’s 5-point Agenda, JF aims to make available fresh water for left-behind communities in Nigeria.

Incorporated to remediate the problems in the areas of Safe Water, Sanitation and Hygiene (WASH), JF has been able to streamline the percentage of those who are short of fresh water while vigorously working on a quick and effective impact as regards clean water.

By 2020, Jaldhaara Foundation plans to drive the WASH objectives in a large number of communities by implementing sustainable WASH solutions in over two thousand (2,000) communities and by building preference for safe water, sanitation and hygienic practices in unaddressed, isolated and marginalized communities.

By virtue of expansion and in the bid to make fresh water accessible to all, Jaldhaara Foundation together with an established strong partnership with Water Health Nigeria and other related organizations intend to have a structured phase approach which is meant to address the life cycle of water management (i.e. water provision, purification and waste water management) to the marginalized communities, which include: communities and habitations that are underserved and face significant water contamination.

*Jaldhaara Foundation will provide safe drinking water access to these communities through the conventional model i.e. a WHC.

*About 140 communities will definitely have safe water access.

The intention also extends to installation of 140 WHCs across various communities in Nigeria which would mean that more than 4 million people will have safe water access which would automatically result in the reduction of waterborne disease with an increase in annual savings in households due to reduction in medical expenses.

March 24, 2019

World Tuberculosis Day with Abraham’s Children Foundation

On World Tuberculosis (TB) day, Olaife Ilori speaks with Victor Dorawa Koreyo, Executive Director, Abraham’s Children Foundation. Here is what he has to say about TB, its causes, symptoms and available treatment:

*What is TB?

Tuberculosis (also known as “TB”) is a disease caused by a type of bacteria called Mycobacterium tuberculosis.

*What is the difference between TB infection and TB disease?

Tuberculosis (TB) is a disease caused by a germ called Mycobacterium tuberculosis that is spread from person to person through the air. TB usually affects the lungs, but it can also affect other parts of the body, such as the brain, kidneys and the spine. It is very important to note that the TB infection is different from the TB disease.

Persons with TB infection do not feel sick and do not have any symptoms. They are infected with M. tuberculosis, but do not have TB disease. The only sign of TB infection is a positive reaction to the tuberculin skin test or TB blood test. So while persons with TB infection are not infectious and cannot spread TB infection to others, the TB disease is infectious and can be spread from one person to another.

*Is TB disease dangerous?

Tuberculosis Disease has been plaguing humankind for thousands of years; it has been and still one of the deadliest infectious diseases in the world.

*How common is the TB disease?

About one-quarter of the world’s population has latent TB, which means people have been infected by TB bacteria. People infected with TB bacteria have a 5–15% lifetime risk of falling ill with TB.

*What is “smear-negative” TB?

Although patients with sputum smear–negative, can transmit infection, indeed, but they have been presumed to be far less infectious than patients who are sputum smear–positive. However, quantitative data are limited regarding the proportion of TB transmission that is attributable to patients with smear-negative.

*What is a TB contact?

Tuberculosis (TB) contact means having close contact with patients with infectious TB. As they are at high risk of infecting non-patients (and in line with the End TB strategy), TB contacts should be investigated systematically and actively for TB infection and disease so it does not spread.

*What is TB exposure?

You may have been exposed to TB bacteria if you have spent time with someone with TB disease. The TB bacteria goes into the air when a person with active TB disease of the lungs or throat coughs, sneezes, speaks, or sings.

*What are the symptoms of TB?

Coughing that lasts three or more weeks.
Coughing up blood.
Weight loss.
Fatigue.
Fever.

*How does TB spread?

TB is spread through the air from one person to another. The bacteria are put into the air when a person with TB disease of the lungs or throat coughs, sneezes, speaks, or sings. People nearby may breathe in these bacteria and become infected. However, not everyone infected with TB bacteria becomes sick.

*Do You Think TB Patients Need to Be Put in Isolation?

Persons who have or are suspected of having TB disease should be placed in an area away from other patients without the disease, preferably in an airborne infection isolation room.

*What is the incubation period of TB disease?

The incubation period of TB disease may vary, but it is usually from 2 to 12 weeks.

*What tests determine whether a person has Tb? are those tests safe for pregnant women?

A positive TB skin test or TB blood test tells that a person has been infected with TB bacteria. It does not tell whether the person has latent TB infection (LTBI) or has progressed to TB disease. Other tests, such as a chest x-ray and a sample of sputum, are needed to see whether the person has TB disease.

TB skin testing is considered both valid and safe throughout pregnancy. TB blood tests also are safe to use during pregnancy, but have not been evaluated for diagnosing TB infection in pregnant women.

*How best should TB Disease be treated?

Treating TB takes longer than treating other types of bacterial diseases. However, for active tuberculosis, the treatment usually consists of a combination of TB drugs that must be taken for at least 6 months. But the treatment will only be successful if the drugs are taken exactly as required for the entire length of time.

*What is DOT and why use DOT?

Directly Observed Treatment(DOT) is the name given to the tuberculosis (TB) control strategy recommended by the World Health Organization. According to WHO, “The most cost-effective way to stop the spread of TB in communities with a high incidence is by curing it through Directly Observed Treatment.

*According to World Health Organization (WHO), between 2000-2014, approximately 43 million lives were saved through diagnosis and treatment. In what way is your organization helping to ensure this disease is kept under wrap?

A massive challenge glares us all in Nigeria especially with the high rate of this disease. That I am wearied beholding the burden even in a community like (Afikpo North Local Government Area of Ebonyi State) is an understatement. As an NGO, we want to redefine the Nigerian health care through speedy treatment of malaria, HIV/AIDS and especially TB. Results of our impactful services in partnership with Afikpo North in the area of TB control is quite encouraging already and i am sure with this step in the right direction, TB Disease will be eradicated by 2030 hopefully.

March 21, 2019

DOWN Today; UP Tomorrow – Knowing Down Syndrome

It is quite distressing, harrowing and mortifying for a child’s right to an amazing life to be decided upon even before their presence on earth. Down Syndrome is a stigma, segregation and a limited life opportunity in most parts of the world and it is rather unfortunate that this is the lime life has given to people living with this disorder.

Down Syndrome is named after the English Doctor, John Langdon Down, who was the first to categorize the common features of people with the condition. It is the most frequently occurring chromosomal disorder and the leading cause of intellectual and developmental delay in Nigeria and in the world. Today the average lifespan of a person with Down Syndrome is approximately 60 years.

This chromosomal disorder is caused when an error in cell division results in an extra 21 chromosomes. Through a series of screenings and tests, Down Syndrome can be detected even before or after birth, which is 1 in every 700 pregnancies. Determined by many factors, research suggests there is a higher risk if the mother delivers at over 35 years of age. Research also reveals that before the age of 30 years, fewer than one in 1,000 pregnancies will be affected by Down syndrome. After the age of 40 years, this figure rises to about 12 in 1,000.

Hence to ascertain the possibility of giving birth to babies with Down syndrome, during the pre- natal period, two types of procedures are available to pregnant women: screening tests and diagnostic tests. The screening tests estimate the risk of the baby having Down Syndrome while the Diagnostic tests tell whether or not the baby actually has the syndrome.

The estimated incidence of Down Syndrome is between 1 in 1,000 to 1 in 1,100 live births worldwide. According to UN, DS causes intellectual disability and associated medical issues.

Sierra Leone, a country in West Africa records the highest mortality rate from DS with 3.8 per 100,000 people in 2013.

In Nigeria local communities believe that all defects or early deaths which may occur in children with DS is traceable to parental misdeeds or links between the child and the evil world. While the myth is most untrue, studies of Down Syndrome covering a period of 9 years have revealed an incidence of 1 in 865 live-births in Nigeria.

FACTS ABOUT DOWN SYNDROME

Older women are more likely to give birth to a child with Down syndrome.
Where there should be two copies of every chromosome. In Down syndrome, there are three copies, either complete or partial, of chromosome 21.
The characteristics of Down syndrome include low muscle tone, short stature and a protruding tongue.
Individuals with Down syndrome have a higher risk of some diseases including epilepsy
Screening tests can be used during pregnancy to estimate the probability that a child will have Down syndrome.

TYPES

The most common form of Down syndrome is known as trisomy 21, a condition where individuals have 47 chromosomes in each cell rather than 46.

*Trisomy 21 is caused by an error in cell division called nondisjunction. This leaves a sperm or egg cell with an extra copy of chromosome 21 before or at conception. This variant accounts for 95 percent of Down syndrome cases.

*Mosaic Down syndrome is when some cells in the body are normal while others have Trisomy 21.

*Translocation Down Syndrome is caused by rearranged chromosome material. There are three 21 chromosomes just like there are in trisomy 21, but one of the 21 chromosomes is attached to another chromosome, rather than being separate.

CAUSES

Every cell in the body contains genes that are grouped along chromosomes in the cell’s nucleus. There are normally 46 chromosomes in each cell, 23 inherited from the mother and 23 from the father.

When some or all of a person’s cells have an extra full, or partial, copy of chromosome 21, the result is Down syndrome.

FEATURES OF DOWN SYNDROME

Children with DS do look a little bit different to other children. Children with Down syndrome often reach developmental milestones later than their peers. On average, a child with Down syndrome will sit at 11 months, crawl at 17 months, walk at 26 months. They tend to have:

Large protruding tongue
Almond-shaped eyes with skin that covers the inner eye
Small ears
A small head that is somewhat flat at the back
Short neck
A single crease across the palm of each hand
Short, stocky and over-weight build
large space between large and second toe
Vision challenges occur in 50% of people with DS. It is advisable to have an eye test done every other year
Congenital heart defects in 40-50% of people with Ds

HEALTH CHALLENGES

There may be higher risk of: respiratory problems, hearing difficulties, Alzheimer’s disease, leukemia, epilepsy and thyroid conditions.

TREATMENT/CURE

There are treatments for Down Syndrome but sadly, there is no cure. Treatments and care are available, however the steps could be utterly frustrating especially with the challenges attached, but with early intervention immediately after birth, the challenges will not be too overwhelming. Hence, appropriate medical care, emotional, psychological and educational care are required from physicians to special tutors, speech therapists, occupational therapists, physical therapists, and social workers, who can come to their aid, by preparing them so they can have equal opportunities for fulfilling lives while ensuring they are not left behind by taking active roles in the society.

March 21, 2019

World Down Syndrome Day -An Interview with DEWDROPS CARE DEVELOPMENT FOUNDATION

With the aim to LEAVE NO ONE BEHIND while ensuring that people with Down Syndrome have equal opportunities to a rewarding and a fulfilling life, NNNGO’s Olaife Ilori, on World Down Syndrome Day, spoke with Grace Bakare, Author of THE PLIGHT OF PARENT RAISING CHILDREN WITH DOWN SYNDROME and Founder, Dewdrops Care Development Foundation.

Grace highlighted the challenges that come with DS and how she has been able to give her daughter the best. “My daughter does not have special needs; my daughter has the same needs as anyone else. She has a need to live at home with her family. She has the need for a good education, good friends, mad fun and a supportive family”

THE INTERVIEW : THE UNCONDITIONAL LOVE OF A MOTHER

WHAT IS DOWN SYNDROME?

Down syndrome is a common birth defect that is caused by an extra chromosome 21 (trisomy 21). It causes mental retardation, a characteristically facial appearance, and multiple malformations. It is a genetic disorder caused when abnormal cell division results in an extra full or partial copy of chromosome 21. Down syndrome occurs in approximately 1,700 live births. Abnormalities are varied from individual to individual, common features include; flat face with short nose, prominent skin folds, and small low-set ears.

WHAT CAUSES DOWN SYNDROME?

While doctors are not sure why there is this birth defect with the extra chromosome 21, statistics show that women of 35 years and above have a higher chance of having a baby with Down syndrome. Normally, each cell in our body has 23 pairs of chromosomes. One chromosome in each pair comes from the mother while the other comes from the father. In Down syndrome, there are three copies, either complete or partial, of chromosome 21.

HAVE PARENTS DONE ANYTHING WRONG TO HAVE THEIR BABIES BORN WITH DOWN SYNDROME?

There is no link to anything in the environment or anything the parents did or did not do. If one has already had a child with Down syndrome, it is most likely to have another. It is not common, but it is possible to pass Down Syndrome from parent to child. Sometimes a parent has what experts call ‘’translocated’’ genes. That means some of their genes are not in their normal place.

SOME PEOPLE BELIEVE DOWN SYNDROME IS CONNECTED WITH SOME VOODOO OR DARK POWERS, HOW TRUE IS THIS MYTH?

Down syndrome has nothing to do with black magic, dark powers, or voodoo. There is no evidence to-date that it connects DS to do any shadowy, indistinct and nebulous folk tales.

IS IT OKAY TO ABORT THE BABY IF PRE-NATAL TESTING REVEALS THE CHILD IS DOWN WITH THE SYNDROME?

I believe it is not okay. It is an abortion which is seen as grave sin in my family. Some people believe terminating the pregnancy after early pre-natal diagnosis is right while others in the religious and anti-abortion group believe it is a sin. In the United States each year, more than 6,000 babies with Down syndrome are born, according to the National Down Syndrome Society, however, almost none are born in Iceland, that is because nearly 100% of women in Iceland who receive a positive test for Down syndrome choose to terminate the pregnancy. In fact the law permit abortions after 16 weeks if the foetus has a deformity. Iceland is not alone in having high termination rates. In Denmark, 98% of pregnancies with a Down Syndrome diagnosis are terminated. In France, it is 77% while United States reads 67%. In Nigeria Down Syndrome families are divided over aborting at pre-natal testing, but major cases of Down Syndrome births are not reported because of the traditional belief that are still associated with witchcraft.

WHICH PARENT DOES DOWN SYNDROME COME FROM?

It could either be from the father or the mother or from both, but it is widely believed that the gene is from the mother. It is a common knowledge that when women age, so are their chances of having a baby with a genetic abnormality. The most common form of Down syndrome is known as trisomy 21, a condition where individuals have 47 chromosomes in each cell instead of 46, Trisomy 21 is caused by an error in cell division which leaves a sperm or egg cell with an extra copy of chromosomes 21 before or at conception.

HOW WILL A CHILD WITH DOWN SYNDROME AFFECT THE IMMEDIATE FAMILY?

Having a child with Down syndrome will affect everyone in the immediate family, most especially young couples. When faced with life’s complexities, one is rendered speechless. At the birth of my daughter Oluwafemi Bakare, my husband was almost questioning my fidelity. ‘’Are you sure you have not been having extra marital affairs? I hope you are not cursed? These are some of the battalion questions my husband asked, while I kept pondering over my entire past misdeeds and judging myself. Whether you are an Agnostic, Atheist, Christian, Ethicist, Hindu, Jew, Moslem, Pagan, etc. you sometimes arrive at a point where you question your belief and wonder if the alternative is a better choice. It is at this point you would ask, “how do I speak with an angel?” an angel of any faith that will give you an answer. How does someone raise a child with Down syndrome and remain sane? How? How does one deal with the long therapy sessions and the bills that come with it? Is it their educational progress or skill acquisition as the case may be? This makes it even more challenging because of the birth defects. Indeed, having a child with Down Syndrome will create a lot of challenges, that is if it does not break the marriage sef.

IS DOWN SYNDROME CONTAGIOUS?

Down Syndrome is non-infectious or contagious. It only affects the one who has it. It is congenital which means, a person is born with it. No one gets Down Syndrome later in life. It is one of the most common genetic birth defects that happens to a child.

DO YOU THINK THE SOCIETY EMBRACES/ACCEPTS PEOPLE WITH DOWN SYNDROME?

In some parts of Nigeria, children with Down Syndrome are still hidden and locked behind closed doors for some parents are ashamed of taking them out. But recently, attitudes towards Down Syndrome have shifted considerably. Before now, children with Down syndrome were automatically institutionalized and many of them died due to some health-related challenges. But in the latter part of the 20^th century, advocacy for people with Down syndrome has been significantly pronounced, children with Down syndrome have begun attending general public schools, have professional jobs and families which has made them a whole lot more independent. The life expectancy for people with Down syndrome has also increased significantly in recent times.

ARE THERE SPECIAL PROGRAMMES FOR CHILDREN WITH DS WHICH WOULD HELP THEM BECOME INDEPENDENT IN ALL SPHERES OF THEIR LIVES?

The most important influence on early development is daily interaction and activities with families. Families are encouraged to access early learning and intervention services that are available from infancy. This will support the development of some of the most important early childhood skills. Early intervention programs are helping children reach their potentials, with this in line, they can graduate to post school training or tertiary institutions.

AS A PARENT OF A DOWN-SYNDROME CHILD, HOW DID YOU RECEIVE THE NEWS AND HOW DO YOU COPE WITH TOUGH DAYS?

When I learnt that my baby had Down syndrome, I was shocked. Twelve years later, I look back and wish I could have encouraged myself much more than I did. Upon receiving my daughter’s prenatal diagnosis, I remember feeling a sense of soul-crushing hopelessness. Hopelessness of what my daughter’s life would be like. Hopelessness of what the diagnosis meant for me as a parent. Hopelessness of how different our family would be from the one I had imagined. I was changed forever with the news of having a daughter with Down syndrome. Today, looking back, I have come to replace that anxiety, sorrow and anger with strength, courage, dignity and determination. There was that stereotyped thought linked with DS; I imagined a life of zero potential, a life spent trapped in a corner unable to have a fulfilling life. An imagination which turned out exactly the opposite. Even during very trying days and I feel like giving up, Grace, my daughter with her beautiful almond-shaped eyes and captivating smile makes all the challenges surmountable.

WHAT WORRIES YOU ABOUT HER FUTURE?

What worries me about her future is in the area of marriage. The day she will leave me to stay on her own, who will be there for her like I do. But I know she will do just fine with or without me.

IS THERE TREATMENT FOR DOWN SYNDROME?

Yes, there are treatments for Down syndrome. Early intervention programmes with a team of therapists and special educators who can treat each child’s specific situation are helpful in managing Down syndrome children.

IS THERE A CURE FOR DOWN SYNDROME?

Down syndrome cannot be cured. However, early treatment can help many people with Down syndrome have productive lives. Children with Down syndrome can often benefit from speech therapy, occupational therapy and exercises to help improve their motor skills.

WHAT IS THE LIFE EXPECTANCY OF PEOPLE WITH DOWN SYNDROME?

With appropriate medical care, most children and adults with Down syndrome can lead healthy lives. The average life expectancy of individuals with Down syndrome is 60 years with many living into their 60’s and 70’s.

WHAT ADVISE DO YOU GIVE TO THAT FAMILY WITH A DOWN SYNDROME CHILD AND TO THAT DOWN SYNDROME CHILD WHO WISHES TO EXCEL IN LIFE?

A most useful advice I can give to a family with Down syndrome child is to learn as much as possible about the chromosomal disorder so they can deal with it squarely. Parents can also join an online parent forum or attend different seminars about living with a child with Down syndrome. And as the child grows, you can work with different therapists who would help improve their skills.

To that Down syndrome child who wishes to excel in life, I will preach FAITH, HOPE and DETERMINATION. Irrespective of any jest or bully made out of the child, he must keep the vision of where he is going vivid and alive, having it at the back of his mind that abilities abound in disabilities.

January 23, 2019

2019 Letter to Nonprofit Leaders

Dear Nonprofit Leader,

As we reflect on the sector in 2018, we think about how the work you have done in communities across the country have touched and inspired hope in the less privileged. We have been most influenced by your resilience, empathy for the downtrodden and found motivation in how you are doing so much with very little resources.

Twenty-seven years ago, when our founding mothers and fathers first began to work on the idea that would become the Nigeria Network of NGOs, they were convinced as much as we are now, that nonprofits play an important role in the fabrics of our development and democracy as a nation. They believed that the resources and approaches of the sector if well leveraged by government and the private sector can have a bigger impact together in the attainment of our national development goals than in silos.

They imagined a Network that can improve the operational environment for nonprofits to thrive. In the last 5 years we have had the opportunity of translating this imagination to reality through our sustained engagement with the executive and legislative arms of Government on the operations of nonprofits. In May 2018, we were proud to see the results of our work in the repeal and reenactment of the Companies and Allied Matters Act (CAMA) which included our recommendations for the review of the Part C which is now Part F of CAMA in the version passed by the Senate.

As we look into 2019, three key challenges stand out for our sector, testing our values.

Our ability as a sector to remain non-partisan

With the 2019 elections only few weeks away, our sector will need to balance its strong links to beneficiaries and more generally to the bottom billion, high level command of public trust and confidence with the political preferences of nonprofit leaders. It is essential to note that nonprofits cannot give their support to a political party or candidate. How our sector manages itself especially in demarcating between activism, advocacy campaign and political campaign will be tested in 2019 and will serve as a benchmark for the 2023 elections.

Civil Society Diversity

Our differences in opinion, perspectives and understanding of issues while an asset will continue to test our common stand on issues such as rights to freedom of speech, assembly and association. We are witnessing a growing trend in our inability to stand up for each other and to clearly define what the protection of civic space means to our sector and our organisations. Our sector will be challenged on how it responds (collectively) to the arrest and prosecution of human right defenders especially those perceived to have political affiliations and interests including how we rally support for nonprofit organisations (local and international) that may be labelled or victimized as anti-government for their work on protecting the rights of the disadvantaged.

Family

Civil society, being an array of organisations outside of government and private sector, derives its strength from the family unit. Our beliefs and thoughts on family planning will shape how as organisations and leaders we support the need for Nigeria to focus energies on managing its population dynamics through improved funding by the Federal, State and Local Governments to family planning programmes- allocated from their domestic resources. It is increasingly clear that our rate of population growth will continue to lead to hunger, malnutrition, housing shortage, inequality and increased crime rate. Our sector will be challenged by how civil society actors, influencers, leaders and institutions within civil society understand the role of family planning in attaining the SDGs and in coalescing around initiatives that call for increased funding to family planning programmes and services.

Addressing these challenges will be our focus in 2019 at the Nigeria Network of NGOs. Rallying sector leaders around proffering solutions to these challenges, navigating through their wisdom, integrity and influence including coalescing for better results and impacts are the key successes we want to see in 2019.

Certainly, this will be a “long walk to freedom”. We are confident that with you, the journey will be short, adventurous as well as challenging; but in the end, VICTORY WILL BE CERTAIN.

Thank you for coming with us on this journey!

Oyebisi, B. Oluseyi

Executive Director, Nigeria Network of NGOs.

January 10, 2019

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