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Tag: Down syndrome

  • Improving healthcare access for individuals with Down syndrome

    Improving healthcare access for individuals with Down syndrome

    World Down Syndrome Day, celebrated globally on March 21st, highlights the importance of raising awareness about Down syndrome, an often misunderstood genetic condition that affects approximately 1 in 700 babies born worldwide. In Nigeria, the Down Syndrome Foundation Nigeria (DSFN) commemorated the day with its 14th annual advocacy event, themed “Improving Support Systems: Access to Healthcare,” aimed at addressing the healthcare challenges faced by individuals with Down syndrome and advocating for better healthcare systems and support for people with all disabilities.

    Down syndrome, caused by an extra copy of chromosome 21, impacts both the physical and intellectual development of those affected. It is not a disease but a condition that brings its own set of challenges, including developmental delays, characteristic facial features, and possible heart defects or gastrointestinal issues. Despite these challenges, individuals with Down syndrome can lead fulfilling lives with the right medical care, early intervention, and a supportive environment.

    During the event, prominent figures including Funmi Falana, a renowned Nigerian legal practitioner, and Dr. Olufunmi Akinola, Chief Consultant and Neuropsychiatrist at the Federal Neuropsychiatric Hospital in Yaba, shared insights into the critical need for improved healthcare access for individuals with Down syndrome. “We must move beyond charity and work towards an inclusive healthcare system that offers equal access to quality care for individuals with Down syndrome,” said Funmi Falana in her keynote address. “It is not just about providing care, but creating an inclusive society where every individual, regardless of their abilities, has equal access to healthcare and support systems.”

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    Dr. Akinola addressed the multifaceted healthcare challenges that individuals with Down syndrome face, emphasising the importance of early intervention for both physical and mental health issues. “Children with Down syndrome often experience a range of developmental challenges, such as speech disorders, memory difficulties and physical health problems, including heart defects,” Dr. Akinola explained. “However, they also face emotional and psychological issues like anxiety and depression, which require specialised care and support. An integrated healthcare system that brings together various paediatric specialists, including cardiologists, neurologists, and speech therapists, is essential for providing holistic care.”

    The advocacy event also highlighted the need for better data collection to inform healthcare policies. Mrs. Nike Dennis, National Administrator for DSFN, pointed out the lack of reliable data on individuals with Down syndrome in Nigeria, which makes it difficult to effectively address their healthcare needs. “Accurate data on Down syndrome is crucial to creating healthcare policies that truly meet the needs of individuals with this condition,” Mrs. Dennis noted. “We must work together to build a comprehensive national database to guide healthcare planning and ensure that services are tailored to the unique needs of individuals with Down syndrome.”

    The event also underscored the growing global movement for inclusion, which promotes the rights of individuals with Down syndrome to access education, employment, and healthcare. Advocacy efforts have led to significant strides in breaking down barriers, with many individuals with Down syndrome now attending mainstream schools, securing jobs and participating in their communities. The message of the DSFN event is clear: Improving healthcare systems and support structures in society can help individuals with Down syndrome lead healthier, more fulfilling lives.

  • Parents seek end to discrimination against persons with Down Syndrome, others

    Parents seek end to discrimination against persons with Down Syndrome, others

    The Parent Teacher Association(PTA) arm  of the  Down Syndrome Foundation of Nigeria(DSFN)  has called on the Federal Government, the United Nations, and civil organisations to wage war against discrimination against persons with Down syndrome and otherdisabilities.

    The PTA  made the call at webinar

    hosted by DSFN  to mark the 2024 World Down Syndrome Day, tagged: “We  all belong: embrace, engage, end the stereotypes.”

    The Vice Chairperson of the PTA

    Mrs. Ugwuegbulam Ruth, noted  that children with Down Syndrome laugh, cry, learn, and love just like everyone else, and “they may take longer to achieve certain milestones.”

    “We want to remind us to spread awareness that Down syndrome is a condition that has to be

    managed to help the child live an almost independent life in the future. I was a young mother

    who gave birth to my child when I was 24 years old. Children with Down Syndrome are unusually born by mothers not having their child at an early age,” she said.

    She urged medical practitioners to acquire more knowledge about this condition, as parents are usually on the receiving end.

    In a communiqué, the National President, DSFN, Mrs. Rose Mordi, and the National Administrator, Mrs. Nike Dennis urged stakeholders to be committed to creating  a more inclusive and equitable society for individuals with Down Syndrome and all individuals with disabilities.

    Mordi noted that it was imperative to  build a world where people with Down Syndrome are celebrated for their unique abilities.

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    “Our theme for this year encapsulates the essence of our collective mission. Engagement is a cornerstone of progress because it fosters meaningful connections and interactions that pave the way for understanding and acceptance. Let us inspire a ripple effect that transcends virtual borders, leading to tangible transformations in attitudes and policies. Let us embrace the differences that make each of us unique, recognising the inherent value that diversity brings to our communities. In doing so, we contribute to a tapestry of inclusivity that reaches the fabric of our society,” she said.

    The Programme Director of Down Syndrome International (DSI), Mr. Nathan Rowe, noted that people with this disability do not have health equity, thus they die younger than other people.

    “Health inequities are due to unfair, unjust, and avoidable situations that afflict persons with disabilities inappropriately: stigma and discrimination, inadequate policies and processes, living in poverty, transport not being accessible, not being physically active, having a poor diet, badly trained health professionals, poor quality health service,among others,” he said.

    A panel discussion featuring the General Manager, Lagos State Office of Disability Affairs (LASODA), Mrs. Adenike Oyetunde-Lawal; Clinical and Educational Psychologist, Prof. Roy Brown; convener of the Ibadan Down Syndrome Parent Forum, Princess Christiana Nwankwo;  Inclusion Advocate, Global Consultant and Scholar, Prof. Paul Ajuwon, pointed out that it was imperative to dismantle stereotypes that surround the disabilities through collaboration.

  • Edo Speaker at Owan summit: Avoid pull-him-down syndrome

    Edo Speaker at Owan summit: Avoid pull-him-down syndrome

    The Speaker of Edo State House of Assembly, Mr. Blessing Agbebaku, has called on Nigerians, especially politicians, to always avoid pull-him-down syndrome, in order to move forward and ensure peace.

    He also urged Owan indigenes to be united, so as to attract more development projects to the area.

    Agbebaku, who represents Owan West constituency, spoke yesterday at Afuze, the headquarters of Owan East Local Government Area in Edo North Senatorial District of Edo State, at the maiden Owan Summit, powered by Owan Conscience, with the theme: “Transcending the Miasma of Ethnic Chauvinism: Towards a People-Centred Development in Edo North.”

    Fourteen illustrious Owan indigenes, consisting of four posthumous, were honoured at the summit, for their contributions towards the development of the area, including a former Inspector-General of Police (IGP), Solomon Arase, and the representative of Owan constituency in the House of Representatives, Prof. Julius Ihonvbere, the leader of the House.

    The Edo speaker said: “The Owan summit is long overdue, but it is never too late. The best time to plant a tree was ten years ago, while the second best time is now.  Owan will no longer be an appendage to other ethnic groups.

    “Let us avoid pull-him-down syndrome. If an Owan man is excelling, an Owan man will want to pull him down. Equity and fair sharing are also very important, for progress, development and peaceful co-existence. Owan Nation has been marginalised for a very long time. Now, we need to take the bull by the horns. Rest assured, I will stand for Owan people anyday, anytime.

    “I want to thank you, as the Speaker representing you in the Edo State House of Assembly. You cannot sit inside the house to see the moon. If you must see the moon, you must come outside. That is why as Owan people, we must fight for what belongs to us, since power is not served a la carte. We want to pursue it, wrestle it, and take it, and that is what the vibrant Owan people must continually do.

    “I am your very vibrant, restless, and hyperactive son that will always stand for Owan people, to make sure that things that belong to Owan people are given to us. Owan is not too small to have a university, as we have all it takes to have a higher institution. We will soon start driving the vital university project. I want to assure you that as the Speaker,  I will do everything possible to make sure the Owan nation is great.”

    Agbebaku also thanked Obaseki for various development projects in the two Owan LGAs, while urging him to do more, and added that very soon, Owan would be a great place that everybody would want to come to.

    The Chairman of the occasion, Justice Rowland Amaize, a retired judge of Edo High Court, in his opening remarks, insisted that Owan ethnic nationality could not be undermined in any circumstance in Nigeria.

    Amaize also described Owan as a viable land that must be reckoned with in Nigeria, while stating that the ethnic nationality could not afford to lag behind, but the people must eschew primordial considerations and never to undermine the youths.

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    The Chairman of the Planning Committee of Owan summit, Richard Ofen-Imu, a lawyer, in his welcome address, disclosed that Owan conscience was a response initiative, focused at identifying basic anti-development obstacles confronting the Owan people, and resolving the contradictions in the best interest of the senatorial district.

    Ofen-Imu said: “Critical to the present challenges of the Owan people is a process of denigration integrated into a philosophy of alienation. It is about a deliberate design to enthrone an inferiority complex in the psyche of the Owan personality. It is a response to the compass of derogation, inferiority, subjugation, and alienation foisted on our people and community.

    “As patriots and objects of holistic development, we will be undermining the development of our country, when we permit or tolerate ethnic chauvinism that eliminates the best brains and hands of our own small geographical compass in harnessing the potential of our country.”

    The planning committee chairman also stated that beyond the provocation rendered by ideological contraption, Owan conscience was focused at making responsible and responsive leadership the hub of the cultural nexus.

    The keynote speaker, Prof. Monday Igbafen, of Edo state government-owned Ambrose Alli University (AAU), Ekpoma, noted that the theme of the summit was apt, in view of the renewed awareness and agitation for fairness and equity in the sharing of political power among three sub-ethnic groups of Edo North senatorial district: Etsako, Owan and Akoko-Edo.

  • Couple with Down Syndrome to celebrate 22nd Anniversary

    Couple with Down Syndrome to celebrate 22nd Anniversary

    WHEN Maryanne and Tommy Piling were married, the bride’s mother received ugly comments about the union of two people with Down Syndrome.

    “Some people said to my mum that it was disgusting,” Maryanne’s sister, Lindi Newman, told InsideEdition.com by phone from her home in Essex, Great Britain.

    “They gave my mum a lot of grief.”

    But the mother and daughter never faltered in their belief that the couple was deeply in love, and that walking down the aisle was their tender right.

    “I’ve never seen love like it among any other couple,” Newman said.

    The Pilings’ marriage has lasted more than two decades. This summer, the couple will celebrate 22 years of living together as husband and wife.

    Maryanne was 24 and Tommy was 37 when they tied the knot in a traditional ceremony. She wore a white, flowing gown and a tiara. He wore a dark suit and a big grin.

    They met at a school for special needs students and Maryanne was instantly smitten, her sister said. She brought him home for dinner and Maryanne’s family fell for him, too.

    After about 18 months, he asked Maryanne’s mother if he could propose. She said yes, and took him to a jeweller to buy a proper ring.

    Newman said it never occurred to her that her sister was different. It was only when she started getting bullied at school that she realized Maryanne was special in her own way.

    “It was name-calling, horrible words… ‘You’re the one with the spastic sister.’”

    It eventually died down, she said, as awareness spread of the chromosome condition that limits developmental growth.

    Maryanne and Tommy can’t read or write, but they have their own home and hold down jobs, Newman said.

    Maryanne’s mother lives next door and Newman is just down the road.

    They take turns cooking and cleaning for the couple, and Newman drives Maryanne to her volunteer job in a local shop.

    Do Maryanne and Tommy ever argue like a long-married old married couple?

    “Very, very rarely,” Newman said. “They differ on very, very small things.”

  • FBNInsurance Group donates to Down Syndrome Foundation

    Sister insurance companies, FBNInsurance Limited and FBN General Insurance Limited, has donated some items to the Down Syndrome Foundation as part of their Corporate Social Responsibilty (CSR), Managing Director, FBN General, Bode Opadokun, has said.

    He made this known at the resource centre of the Foundation in Lagos, saying the companies were committed to the general upliftment of the society.

    According to him, the companies donated various food items, toys, beverages and some cash to the management of the Foundation.

    He added that the items were largely raised through the companies’ annual Staff Gift drive, an in-house scheme that encourages members of staff of both companies to donate various items to a common cause.

    While receiving the combined team of both companies, the Foundation’s Administrative Manager, Muyiwa Majekodunmi, thanked the companies for the gesture and used the opportunity to enlighten the team about Down Syndrome.

    He said: “Down Syndrome is just a freak of nature; it’s a chromosomal defect. Each cell contains 21 chromosomes, but for Down Syndrome patients, somewhere along the line during conception, an additional chromosome pops up thus causing the condition.

    “These are wonderful kids and the reason why we exist is to act as an advocacy group for them and ensure that they become useful to themselves and the society. We are like that bridge between them and the society.”

    Opadokun charged the management to keep up the good work.

    “We know something great is happening here and as companies committed to the general upliftment of the society, we will always do our bit to encourage and support the continuous success of the Foundation,” he said.

    FBNInsurance Limited and FBN General Insurance Limited are both members of FBNHoldings associated with the Sanlam Group.

  • Foundation seeks support for children born with Down syndrome

    A not-for-profit organisation, Down Syndrome Foundation Nigeria (DSFN), is seeking support for children born with Down syndrome – a condition in which extra genetic material causes delays in the way a child develops physically and mentally.

    At a briefing on this year Down awareness week with the theme: Accept, educate and inspire, the foundation said, there was need to advocate the right of people living with the condition.

    A parent of a Down syndrome child, Mr Muyiwa Majekodunmi said there was need for more awareness on the condition.

    He advised Nigerians to accept, educate and inspire people on Down syndrome.

    A film maker from the United States, Steven Gatlin said people should create and share the awareness on the condition.

    “As a film maker, I have to take what I am learning to share with the others what the condition is all about across the world. I have a four years old son who is living with the condition. It all starts with you accepting your child and being aware that they have something called Down syndrome. When my child was born I knew he had Down syndrome but I never had an experience with it. I basically do what I can as I share what I learn as he grows. ,” he said.

    He said as he learns more and share his experience on the condition he hopes that other people would same to elevate awareness on Down syndrome.

  • Man remanded for raping Down Syndrome child

    A 27-year old man, Austin Okonkwo, has been remanded in prison custody by an Evboriaria Chief Magistrate Court sitting in Ikpoba-Okha for allegedly raping an 11-year old Down syndrome child.

    Unprintable words were used on accused when the victim was presented before the court.
    The accused pleaded not guilty to the one count charge preferred against him.
    Police Prosecutor, Aigbedion Obakpolor informed the court that the offence was committed on November 29.
    Chief Magistrate, Frank Idiake, who refused bail application said rape incidents was on the increase.
    A relative of the victim who pleaded anonymity after the court sitting said the accused took the girl to his room where the act was committed.
    The relative said the victim cried of pains in her vaginal which led to the arrest of the accused.
    The case was adjourned to 21st January, 2015.
  • Climbing for down syndrome

    Climbing for down syndrome

    In a bid to raise funds for the Lagos-based Down Syndrome Foundation (DSF), six Nigerian professionals are aiming to summit the peak of Mountain Kilimanjaro, Africa’s highest mountain. DSF is a renowned charity that works to provide support to persons with Down syndrome in Nigeria.

    Tagged ‘Climb for Down Syndrome’, the six-day hike which is set to raise ten million naira (N10, 000, 000) is scheduled to take between the 16 and 23 of August in Tanzania is the brain-child of Inspired by Charity, a social enterprise.

    Kilimanjaro, the highest freestanding Mountain at 5,895m high, attracts over 40,000 climbers annually. Of the seven summits, it is the easiest to climb, requiring no ropes, or special mountaineering gears or previous climbing experience.

    The ‘Climb for Down Syndrome’ Party will be climbing through the Machame route, one of the seven routes to Uhuru summit.

    The choice of the route according to Dotun Eyinade, the convener is to ensure that everyone acclimatizes quickly and to increase the chances of success.

    “Climbing Mt. Kilimanjaro remains a physical and mental challenge,” he said. “And for many of us it will be one of the most physically exacting things we would do in our youth.”

    To Inspired by Charity, the climb is more than just an adventure but also a purposeful intervention in support of Down Syndrome Foundation.

    Eyinade, a Fellow with Acumen Fund said the team would leverage the media, especially new media platforms to raise awareness about Down syndrome and the Foundation.

    “As socially minded professionals, we are excited about the prospect of using the hike to fundraise for Down syndrome foundation and help to place Down Syndrome on the front burners of public discourse again.”

    The professionals are drawn from KPMG, Seven Energy, Generation Enterprise, and Acumen Fund amongst others.

    And their aspiration has received the endorsement of the Down Syndrome Foundation.

    “This is a worthy and unique concept which I believe must be the first of its kind in our country,” said Mrs. Rose Mordi, President, Down Syndrome Foundation. “We would love to thank the team for believing in our cause and finding our Foundation worthy to benefit from this unique event.”

    Donations in support of the Climb can be made directly to the bank accounts of the Down Syndrome Foundation as well as on www.234give.com, a crowd funding platform.

  • A heart for Down Syndrome children

    A heart for Down Syndrome children

    He came in a red robe. He wore a smile and a look of surprise on his face. He had visited several charities but it was his first at one that cares for people with Down Syndrome.

    The Bishop of Diocese of Lagos West of the Anglican Communion Rt Rev. James Odedeji was there to celebrate the season with them and donate gift items to the foundation. The clergic and his wife, Lydia, with other members of his entourage, were received by the members and children of the Down Syndrome Foundation Nigeria (DSFN) with excitement.

    Little Shadrach Ugwuegbulam stood out with a bright smile on his face as he hugged and shook the Bishop’s hands; and, then, posed for the camera. But he was not alone. Like Shadrach and others, the bishop and his wife were also excited to be there.

    Moved by the warm reception, she said: “Children we are very proud of you and we love you.”

    Also in the entourage were Archdeacon Ikeja, Ven. Israel Owoyele; Rev Oluwole Ibikunle; Rev. Isaac Taiwo and Diocesan Communicator and The Nation Editorial Board member, Mr Bolaji Omonijo, among others.

    On the visit and show of love by the dignitaries, DSFN Administrator, Ms Amaka Obidi, said, the foundation, parents and children with the condition are encouraged. DS, she said, is medical condition in which there is an extra chromosome in some or all of a person’s cells. For 12 years, the foundation has continued to cater for people with the condition with the support of well-meaning Nigerians, while preaching the message of hope, according to her. She added that it now runs a school for boarding and day students where they are empowered to live better lives.

    “There are normally 46 chromosomes in each cell: – 23 from each parent. When there is an extra full or partial copy of chromosome 21, the result is DS. All hope is not lost. DS can be managed and with early medical, educational and social interventions, the child can lead a normal and happy life. And the foundation is here to give such support.

    “Every year, DSFN with the support of public-spirited individuals and corporate organisation sends children abroad for corrective surgeries, among other care. I must state here that the wife of the Lagos State Governor, Dame Abimbola Fashola, has been very supportive. Last year, we sent seven children abroad for surgeries. Beside educational and social support, we now have a land in Ikorodu where we hope to build an ultra-modern centre,” she said.

    One thing has remained constant since the foundation was established in 2001 by a parent of a child with Down Syndrome (DS) – societal attitude towards parents and, especially children with the condition, DSFN Administrator said. She, therefore, called for support from the public to stop malicious acts against the children, saying the foundation is constantly creating awareness, especially during the World Down Syndrome Day celebrations to curb the trend. The Bishop’s visit, she noted, will do more to clear the air on the myths and misconceptions surrounding the condition.

    Ms Obidi said: “It is always a source of joy to have people visit the foundation. Despite our efforts towards creating awareness that children with DS and their families can live a normal life, they are still faced with all sorts of discrimination due to misconception and myth about the condition. With people like His Lordship identifying with us, you give us, at DSFN, parents and children hope that we are not alone and that there are those who still love us. It motivates and puts smiles on our faces and that of parents and children of the foundation.”

    Shadrach’s mother, Mrs Rose Ugwuegbulam, reiterated Obidi’s views. While urging parents with children that have the condition against discrimination and abuse, she noted that, oftentimes, most of the children are not given the care and love they deserve. Citing herself, she named early invention as a key to enhancing the child’s development.

    She said: “As a parent, it is challenging, but I am more than a parent. I am a volunteer at the centre and advocate of early intervention. What an average child would achieve in one year, it would take three for a child having the condition to achieve. And the condition comes in different categories. It is like not malaria that you take drug and you are cured. With early intervention, it may take a longer time but the child would also achieve what others had. In the case of my Shadrach, I started early when he was one year old and that has helped his development tremendously.”

    Moved by the words of parents and care-givers of the foundation, the Bishop said the church would partner with the foundation to create awareness and support on the condition and those with it. He praised the efforts of the parents and care-givers, saying their work with the foundation are God’s heartbeat and “true religion”. He left them with a promise to return.

    “I am impressed with the work you are doing here. This is the mission of the church and pragmatic evangelism to reach out to the physically-challenged and less privileged around us. Our mission here is to fulfil God’s word and the church’s mission. Henceforth, we are going to blow your trumpet on rooftop. The church is always in support of laudable projects and causes as this. They are also our children: we should be proud of them and make life comfortable for them. I would discuss the issue with other priests. We would follow you to Ikorodu. And I will visit you again,” he said.

  • ‘Support people living with Down syndrome’

    Nigerians have been told not to discriminate against people living with Down syndrome (DS).

    President, Down Syndrome Federation Nigeria (DSFN), Mrs Rose Mordi, said people with DS still face challenges of inclusion and integration.

    Mordi, who spoke in Lagos during the opening of Down syndrome awareness week titled: I have a voice, said people with this condition have rights to employment and contribute to the development of the country.

    She said some of them have been trained in crafts to live independently, adding that governments, corporate organisation, religious institutions and the people should make things work for them by offering them employment.

    Mrs Mordi said they have a voice and they should be heard because “they are humans.”

    General Manager, Lagos State Office for Disability Affairs (LASODA), Dr Babatunde Awelenje, said the state government has enacted a Special People’s Law to ensure that persons with the disability enjoy equal opportunities and chances.

    He said people living with DS need early medical intervention so that the outcome can be better.