Tag

Sickle cell

Browsing

Sheila Ngoli Akputa wears two hats – one as a dedicated Business Analyst and the other as the compassionate founder of PESBODS (Peachman’s Smile Boosters Organization for Children Living with Disabilities, Autism, and Sickle Cell). Sheila is a person who exemplifies resilience, empathy, and the unwavering determination to make a difference in the lives of those facing adversity.

A Dual Role

Sheila’s days in the office involve meticulously dissecting complex data, finding innovative solutions to intricate problems, and contributing significantly to the workings of a government organization. It’s a role that demands precision, intellect, and strategic thinking. Yet, what sets Sheila apart is her remarkable ability to balance this demanding career with her other calling – advocating for children with disabilities.

PESBODS – A Beacon of Hope

PESBODS is not just an organization for Sheila; it’s a labor of love, a testament to her unwavering commitment to improving the lives of children facing significant challenges. This organization is a haven for children living with disabilities, autism, and sickle cell, and it extends its compassionate embrace to the caregivers who tirelessly support them.

Community Engagement Extraordinaire

Sheila’s deep knowledge of community-level engagement has been instrumental in driving PESBODS forward. She understands that change starts at the grassroots, and her dedication to grassroots advocacy is a testament to her true passion. Soft-spoken and humble, Sheila’s approachability endears her to all who have the privilege of knowing her.

Children with Disabilities
Sheila Ngoli Akputa- Founder, PESBODS

A Personal Mission

What sets Sheila’s advocacy apart is its deeply personal nature. Her son, who is about to turn eight, has faced countless medical procedures since just two weeks after his birth. Sheila has been a witness to her son’s resilience and the immense strength he summons daily. It’s a journey no parent should have to undertake, yet Sheila has done so with grace and tenacity.

Heartache and Loss

Sheila’s determination to make a difference is also rooted in heartache. She has tragically lost two cousins to sickle cell disease, a painful experience that left an indelible mark on her and her family. The loss of these young lives has been a stark reminder of the challenges many families face when dealing with disabilities and chronic illnesses.

Empowering Children

Sheila’s vision for PESBODS goes beyond providing assistance; it’s about instilling confidence and inspiring children to believe in their potential despite their disabilities. She wants these young souls to recognize their abilities, to aspire, and to know that their dreams are within reach.

In a world often focused on profit margins and individual success, Sheila stands as a beacon of compassion and empathy. Her dual roles as a proficient Business Analyst and a tireless advocate for children with disabilities are a testament to the multifaceted nature of her character. With her unwavering dedication and personal connection to the cause, Sheila is helping to reshape the lives of children and families in need, one smile at a time. She is a true inspiration to us all, reminding us that even in the most demanding of careers, there’s always room for compassion and the pursuit of a better world for those who need it most.

Mary Oyohosuho Phillip Is  a sickle cell warrior, a sickle cell advocate, a Confidence Coach and Skin Care Consultant. Mary is  the first Sickle Cell Warrior in her family, out of 3  in total 5 kids. Mary  suffered severe complications of sickle cell, and was bedridden for 3 years, this resulted in deformity.
She has  managed to further her  higher institution learning  walking with two sticks.  Mary’s lived experience as a sickle cell survivor is a tool she continuously used to inspire, motivate and encourage people. She goes to schools, churches to share her survivor story.
In this interview with Esther Ijewere, the founder of Jesus Girls Club, Int’l shares her inspiring story.
 Mary Oyohosuho Phillip- Sickle Cell Warrior

Childhood Influence

 I can truly say that my childhood prepared me for what I am doing today. While growing up, I watched my parents give their all to serving humanity and affecting the life of people positively. I have admired and wished  to affect the lives of people just the way my parents were doing, and that has given me that push in life  and has brought me to where I am and what I am doing  today.

What Inspired Me To Be A Sickle Cell Advocate 

 What basically inspired me to be a sickle cell advocate   is first, me being a sickle cell warrior, having two other siblings being warriors too in total making   three warriors in the family. Secondly, losing my younger brother to sickle cell. Thirdly how sicklecell got me deformed, all the excruciating pain, discomfort, and all that comes with it. Going through all this I became dedicated in creating sickle cell awareness for people to prevent birthing children with the sickle cell disease.

Jesus Girls Club

Going by all the social vices that we hear daily in our society  which affect the girl child, I always get heartbroken  and think of  a way to change the narrative.  Social vices like early pregnancy, rape, molestation, sexual abuse etc. when I hear and watch young ladies  in other part of the world  doing  amazing  thing in their different  field  endeavors , this  challenges and motivate me to want to groom and teach teenage girls starting from my community , to my  country   and to the world at large on having  good morals, building a healthy self esteem self discovery and purpose driven life.

Another major thing that motivated me to start Jesus girls club was when I heard that in this age and time teenage girls  still make use of cloth pieces, that is, rags to care for themselves when on their menstrual flow which is unhygienic  to  their health. This broke my heart completely.

The Journey So Far 

 The journey since I started my organization has been full of ups and downs. At the beginning it was going smoothly but along the way many obstacles and challenges came up. At one point I gave up completely, but my passion for  this vision brought  me back on track.

Challenges 

There are so many challenges :first lack funds . Since after my NYSC  my inability to get a job was a  big challenge in carrying out my vision but the little business I was doing and the passion kept the vision running. Then the second challenge was reaching out to these teenage girls in remote rural communities where roads are accessible, and I don’t sit so well on a bike. So in general, funds and mobility are my major challenges.
How My Work Inspire Sickle Cell Advocates 
 wow! Am certain that my work has inspired other sickle cell advocate because so many Warriors always reach out to me in my inbox, telling me how I inspire and motivate them to do better in their advocacy.

Other Projects And Activities

There are so many other projects and activities lined up for my organization. First, getting my foundation registered with the corporate affairs position (CAC) ready so I can operate officially. Presently there is a project at hand called: “BACK TO SCHOOL CAMPAIGN”. My organization will be providing writing materials such as Notebooks, pens, pencils, erasers etc for children in public schools whose parents can’t afford those materials for them. There are many other projects coming up and this is a call for people to sponsor and partner with me in achieving this.

What I Enjoy Most About My Job

What I enjoy most about my job is seeing smiles on the faces of people we reach out to. My prayers to God when I was growing up, was that God should use me as a channel to bring joy into the life of people so, for God to help me in this little capacity, gives me great joy and I want God to bless me more to do greater Exploits and reaching out to more & more people within Nigeria, Africa & the world at large. That will be my greatest joy.

3 Women Who Inspire Me And Why

Since I began this Journey, there are three (3) powerful women I have seen & they inspire me greatly they are:
1. Esther Ijewere [Founder, WOMEN OF RUBIES]
2.  Dr. Adesoye Tosin (Founder Sickle Celebs)
3. My Mother Mrs. Blessing O. Phillip
1. Esther Ijewere is one woman I love so much, she inspires me. Since I came across her on Facebook, I always rush to her page everyday to read what she has posted. I admire her strength,I admire her supporting women and generally I classify her as Beauty & Brains.
2, The Second woman that inspires me so much is Dr. Adesoye Tosin, the founder of Sickle celebs. When I began the journey of advocacy for sickle cell. The first woman I came across with the same issue as mine is Dr Tosin. I thought to myself,  if a young lady  with sickle cell can go study a course as tedious as medicine and still do well in it then, she is worth emulating and this got me inspired.
3.. The third woman that motivates me is my biological mother Mrs. Blessing O.philip. a woman who is my first teacher, doctor, prayer warrior and caregiver.  A woman that never stopped loving and caring for myself and my siblings after the demise of my beloved daddespite our many health challenges. My super hero, my strong support system, my disciplinarian but correct in love I admire her strength, perseverance, doggedness.

On The Stigmatization Of Sickle Cell Warriors

 one thing I will say to people who stigmatize sickle cell warriors is that “STIGMATIZATION IS VERY BAD”. No one choose to be born with sickle cell or any other health challenge. Stop stigmatization, show love, empathy to sickle cell warriors. Do not discriminate, we deserve to love and to be loved in return.

 What Government Should Do To Support Sickle Cell Warriors

The government should make the health facilities & health insurance available and accessible to sickle cell patients in our hospitals.  Routine drugs and medical checkup should be provided or made cheap for sickle cell   warriors / caregivers to afford.

Being A Woman of Rubies 

I  am an extraordinary lady who lives an exemplary life for the younger generation to emulate. A go-getter, a warrior who never gives up. A fearless woman, courageous, tenacious. A lady who works towards leaving an impactful footprint on the sands of time

What I Would Say To A Young Person On The Verge Of Giving Up 

“GIVING UP SHOULD NOT BE AN OPTION”. Embrace life to the fullest. Believe in God, and yourself and Hope for a better tomorrow. Put in your own efforts, because “THERE IS A PRICE FOR EVERY PRIZE”. Thank you

At age 18 Oluwakemi Oguntimehin was depressed and got tired of the stigma she faced due to her sickle cell disorder.

She thought she wouldn’t’ live   more than 20 years and saw no reason to wait till then, Kemi attempted suicide twice, got saved and realized she was Indeed  created for a purpose. In her pursuit of purpose and passion to help other  sickle cell warriors she founded Ignite Sickle Cell Initiative.

Oluwakemi Oguntimehin is a sickle cell warrior, a sickle cell advocate, an entrepreneur and change agent. She is giving hope in a not so hopeful society and lending her voice to the voiceless. Kemi shares her very touching and inspiring story with me in this interview.

In her words “Never allow the stigma and discrimination you face to affect your mental health. Accept yourself for who you are, focus on yourself, invest in your personal development ,self care, health , dream and vision”.

Childhood

Growing with sickle cell is not fun,  I was always restricted for fear of being sick, despite that I was mostly sick.  Not knowing what is wrong with me, with hospital turning to my second home, having to take blood transfusion every now and then. While thinking about all these , trying to know what is wrong with my body, since I don’t know about sickle  cell, nobody told me anything not even the Doctor, until I heard my teachers and classmates called me sicklier and treated me differently. On the other side are Pastors who will always come to pray for me in the hospital with revelations that I was a witch, some of this pastor said , I belong to a strong marine spirit group ,other labeled me as Agbana(money sucker) basically saying that I was sent to waste my fathers money on purpose and would only die after I have succeeded in turning him to a poor man.

The stigma and discrimination were every where from  teachers to classmates, to nurses, to  doctors who told my parent to forget me and focus on the other children because I might not live past 18 or 20 years at maximum.

As a young child who just  want to be normal, not restricted, not always using drugs, yet constantly  tongue lash by people to others  calling me witch, who see me as the cause of my problem is something that was beyond me.  Thinking about it now, if only the right information was out there, I think my growing up would have be more easier. To help children living with sickle cell have an easier childhood is the reason I decided to break the silence on sickle cell through the right information. I believe without a rough childhood I might not be passionate about sickle cell awareness. So my growing prepares me for what I do now.

Inspiration behind Ignite Sickle Cell Initiative

The ignorance surrounding sickle cell disorder even among some medical personnel is heart breaking.

Not to talk about the stigma and discrimination people living with sickle cell faced in the society. I see it as  people living with sickle cell are the one who received the blame , the torture of our parents mistake.  Despite the pain and what we passed through, the society still blamed us , some children has been abandoned, some parents refuse to send their children to school because of false beliefs.

I believe people love to learn from other people experience. Using my life and experience to teach people belief on sickle cell will go a long way . No child deserve to be treated badly just because she/he has a genetic disorder. All these inspire me to start Ignite Sickle cell Initiative.

Overcoming Depression

I have been showing symptoms of depression but people don’t care about mental health here. But at age 18, I was greatly depressed.

I was exposed to bullying, stigmatization  and discrimination from child hood friends through my adolescent age. At a point in time, I don’t bother about it again, but getting to university, the bully and discrimination got worse. People were mean to me on purpose, I was treated like I was not human. Imagine you are feeling alone even in the midst of thousand students. From class to hostel. Everyday, I heard people saying it to my face that they pity my parents  who  just wanted to waste their money according to their belief, I would be dead before graduation. Hearing that every day from different  people  add salt to the injury . People seeing me like I was not human, not talking to me, believing I’m less than someone they can talk to or some said my appearance disgust them. I lost all hope and was determined to end my life.  I had two failed suicide attempt and thinking about it now. I’m grateful it failed then. There is more to life beyond the stigma.

Reception since I started my Organization

The reception has been great now, it has improved greatly. Though there is still so much to do but people are learning everyday and the more aware they are, the more the reception they give. We still have a long way to go but It can only get better.

Challenges people living with sickle cell face

The challenges people living with sickle includes, frequent painful crisis that can happen anytime,

Complications from anaemia, to Avascular necrosis that can make some people to be on wheel chair or bedridden, stroke, organs damage and so many more. Apart from the health challenges, there is also stigma and discrimination, where many are denied job opportunity just because they live with sickle cell.  Some are even fired because they are often sick.

Also due to the nature of the disorder, a lot of money are require for sickle cell management  with a lot of people not working and even those who work has to spend majority of their money on drugs and hospital bill. With the current situation of our economy and health, where we have to pay for everything and every services, a lot of parents can’t afford the management,  some are in debt, while some parents neglected some children believing it is better they die.

Other Projects

Other projects includes organizing rural community outreach to educate the communities dwellers and also conduct free genotype test for children ( 0 to 10 years ). One thing is early intervention in sickle cell is needed to reduce high mortality in children living with sickle cell through our Be-Aware campaign.

We also have project X- Campaign where we create awareness in school  both secondary schools and higher institution.

We also give out free routine drugs to people living with sickle cell in monthly basis which we call our “Wellness Clinic”

Apart from Ignite Sickle cell ,  other project is to help people to be confidence in who they are, using their story to change  narrative.  When we are constantly bullied, it affects our self esteem As someone who has  battled low self esteem.  I know the importance of having  a great self esteem. Though a lot of people living with sickle cell battles with low self- esteem though this problem is not peculiar to only  people living with sickle cell. It affect majority of woman and  men too.  To help others who has low self esteem, I have written a book  ,  is will be  available in eBook  as from next month which means distant is never a barrier to get as long as you are on the internet. The book is to help a lot of  people build their self esteem and Become Unstoppable in achieving their goals and vision.

The role the society Play

The reception towards people living with sickle cell in the society is low, unacceptance in terms of marriage, some parents will never allow their son to marry  someone living with sickle cell. Some men think they are doing you a favor by dating you and use that as means to abuse.

People still believe women living with sickle cell can’t give birth and some believe living with sickle cell makes you a lesser woman thus making some women living with sickle cell to hide their truth. They will rather do what they can’t do just to hide the fact that they live with sickle cell.

I think things are getting better though and will always get better.

Challenges of being a Social Entrepreneur

The major challenge is funding. Getting funding from individual and corporate sponsors is not very easy.

In Nigeria , so many people believe you must be rich to be a social entrepreneur and with this mentality, people want you to pay high prices for some things, some even believe the government or some big politicians are the one funding you.  Volunteering is just becoming a thing now and many people want to be paid for volunteering their time because to them you are rich and wealthy.

As a social entrepreneur, I often encounter people who belief sickle cell is not an issue and advise me to change my course to HIV or something else. Some people also think I’m too small to start a social enterprise.

Impact of my work

Average of 100 children has being receiving free routine drugs every month, Our community medical outreaches has reach 6 rural communities  which has impacted over 6,000 individuals directly, Awareness in secondary and higher institutions reaching over 2000 people, 20 people hospital bills has been paid  and Online awareness reaching thousands of people

Being a Woman of Rubies

My impact to change the norms around sickle cell also helping people to be confident in who they are using their story to impact lives makes me a woman of rubies.

To my Parents and those who stood by me through thick and thin

I want to use this medium to appreciate my parents, who never abandon me and believe in me despite everything people said to them. I remembered people told my dad that he shouldn’t bother sending me to University, but they believe I’m a gift to them.

Also I will like to appreciate Chief  Bisi Ogunjobi for his unending support. I remember when we needed a place for our monthly clinic, not only did he give us a building but also furnished it. Thank you for supporting all our outreaches and our monthly clinic every time.

To women living with sickle cell

To women living with sickle cell, Never allow the stigma and discrimination you face to affect your mental health. Accept yourself for who you are, focus on yourself, invest in your personal development ,self care, health , dream and vision. Enjoy life.  Your pain and scars are the evidence that you are a survivor and a warrior.  Believe in yourself that you can achieve anything despite the pain because I believe in you. If I can do it, then you can do it.

 

 

 

 

 

The best way to deal with challenges is to not just keep fighting until you win, but also to help others who may be going through something similar win.

Abimbola is a sickle cell warrior who’s helping other warriors fight and win.

She’s the founder and coordinator of WarriorStory Initiative, a non profit community of people living with sickle cell diseases.

The platform provides education, counselling and advocacy for sickle cell health. The community shares stories of warriors with the aim of inspiring others.

It’s also begun a monthly sickle cell clinic where it brings together varying consultants who have specialties in caring for SCD patients.

The aim of this initiative is for sickle cell patients to have access to affordable, fast and reliable monthly check ups and first aid care.

It’s providing the service for free for the first three months, after which patients can attend by paying a token as monthly subscription to access care.

Worried about the shortcomings in Nigeria’s healthcare system, Abimbola, who holds a post graduate diploma in Biomedical Engineering, decided to fix a part of it.

Nigeria needs to do a lot technology-wise to be able to care for patients, and Abimbola is helping to achieve this. She founded Toyo Meditechs.

Toyo Meditechs provides sales, installation, maintenance, repairs, and training in the use of medical devices and equipment.

We celebrate Abimbola for devoting her life to solving problems and helping warriors win. We’re rooting for her!