Meet Q and Siba

Introductions

Qaqambile

My name is Qaqambile Makamu - Phika born and bred in Soweto (Johannesburg) South Africa. I am a bubbly woman who loves life. Growing up I used to participate in school choirs and drama. I am always active in the community as this fulfills me.

Sibaluhle

Sibaluhle is a breath of fresh air, he has a bubbly personality, oh he loves the spotlight, you can give him any challenge, he will tackle it with his bravery. He loves travel and motor sports.

Birthing Siba

I fell pregnant at 22.  My pregnancy journey was good, all periodic scans and check ups had positive results showing a healthy baby with no abnormalities. 

I experienced labour pains for three days. As they handed my boy to me, I just saw a huge cut on his lips. In a lot of shock I asked the nurse if they perhaps cut my son's lips? Her response was ma'am you just gave birth to a child with Cleft Lip & Palate.  They took him into an incubator as I cried myself to sleep.

I started wondering what are people going to say, what is the father of this baby going to say as well.  All these questions came to mind because when you gave birth to a child with a disability or special needs, you were either bewitched or it was taboo.

I became highly stressed as I didn't know how I am going to face this new challenge in my life. I asked God a lot of questions: why me as I am a first time mom and motherhood should be enjoyable.

Support Structures

As I took time to process my new reality, I called my mom to inform her about my son being unwell and his condition. My mom arrived within an hour of our conversation. Her support really carried me through as a new mom. My maternal family members also came on board fully to support me. I also received support from Siba's dad's family.  

Friends who always make sure that all is ok are Kasi Vusa (he passed away) and Nthabeleng Lesunye. She always checks if Siba is well. Last year I went to the Eastern Cape to raise awareness, and Siba got a mild stroke, she took care of the whole incident without telling me as she knew it may cause panic. All she did was stay with me on the call, giving me updates and comfort until I got to see my son in hospital. 

Another friend is Pillarsol, this gent always supports our awareness events. As a motorsport expert (spinning) he always ensures that attendees are entertained.

Mom and Son 

My moments with Siba are very special. God blessed me with a special child and I embrace that everyday. I wish for parents to accept their children with special needs. Children with special needs also love receiving the love. I've seen that it helps the child with accepting their uniqueness. This also helps with boosting the child's confidence through harsh treatments they may encounter. 

Siba's presence in my life taught me a lot about self love, I was just living and unbothered as a young adult, my life didn't have a deeper meaning before I birthed him.  I started approaching life as a responsibile mom.

Cleft Lip & Palate 

Medical explanation: A common congenital birth defect where the roof of the mouth does not fully close during fetal development leaving an opening between the mouth and nose.

Q's experience: When Siba was fed, food would come out through his nose, I couldn't breastfeed him because the gums were wide open, all our bonding through breastfeeding gone just like that. This broke me emotionally because I imagined and wished for those moments.  

Siba goes to hospital most of the times to check on the following for his physical wellness:

1. Plastic Surgeon Ward by Dr. Brian Monaisa, who has overseen every operation from Siba's birth as they had to  reconstruct his face. Siba has a lot of confidence to look himself in the mirror because of this man.
2. Psychiatric Clinic.
3. Ear, Nose and Throat Ward for his ears.
4. Speech and Audiology Therapy to improve his speech

Sibalwamazizi Foundation 

With time progressing and Siba growing up I reaslized that he gets teased and bullied about his condition especially at school.  Whenever he would report, teachers would not believe him then he started retaliating.  I eventually decided to enroll him to a school that accommodates his condition. This created the need for the Non Profit Organisation to raise awareness.

I decided to register a foundation so that I can host events to raise awareness. The awareness events are meant to encourage parents from hiding their children and exposing them to the communities and the outside world. This  helps parents to meet other children with various disabilities which creates a safe space and mothers are able to heal as well.

Usibalamazizi has grown because of the warm support from Gogo Clare Loveday (Sibas white grandmother), Thandi Manaswe (Aunt) and everyone who contributes and support the Non Profit Organisation. This means a lot to my son and I.

As a foundation, we would like to expand to other provinces to advocate and educate families about disability mainstreaming for families and neighbors. I love the saying that says "love yourself the way you would love your neighbors". This approach will help us in building a better society. We have partnered with Vukuzenzele School in the Eastern Cape (Bizana) for disability awareness as the school accommodates learners with various disabilities.

One of my visions is to own a media house and a podcast channel where we feature people living with different types of disabilities.  

Moments of Victory

1. The awareness events gained traction.  I started getting invitations for interviews at different radio stations, magazines and news papers.  Those moments made me feel like God is using me to reach out to people especially mothers raising children with special needs. 
2. The awareness events, I do not follow a strict formal set up as the mothers need a calm environment. We even play at our events. 
3. I have networked with different surgeons where I refer the mothers to for help.
4. I offer support to mothers in other provinces as they navigate these life's challenges.
5. Helping a child to get a wheelchair from the Department of Health they had struggled for a long time, because they didn't know which doors to knock on.

Gratitude Note 

Thank you so much for taking your time to read. I cannot wait to share further exciting experiences with you.  Please kindly share this post with as many people as you can as it will help me reach out to the world.

Tribute To Mothers Raising Children With Special Needs

A Day To Remember

On the 21st of March, South Africa pauses to remember Human Rights Day.  A  day rooted in our country’s long journey toward dignity, equality, and justice for all. We remember those who sacrificed so that every person could live with freedom and respect.

Beyond the speeches, the history books, and the ceremonies, there are quiet heroes among us who live the spirit of human rights every single day.  They are mothers raising children with disabilities and special needs.

Human Rights Day reminds us that dignity belongs to everyone. It belongs to every mother who refuses to let the world define what her child can or cannot become.

Courageous Women

These women may not wear uniforms or stand behind podiums, but their courage, patience, and love are nothing short of extraordinary. Their strength is not measured in grand gestures but in the countless small acts that fill their days - the appointments, the therapies, the sleepless nights, the advocacy, the worry, and above all, the unwavering love.

To many people, these mothers are simply “parents doing their job.” But to their children and to those who truly see them, they are heroes.

Daily Struggles 

Raising a child with a disability in South Africa can come with unique challenges. Access to healthcare, inclusive education, social acceptance, and proper support systems are not always guaranteed. Many mothers find themselves fighting battles they never expected: explaining their child’s condition to strangers, pushing for fair treatment at schools, navigating systems that were not designed with their children in mind.  And yet, every morning, they rise again.

They become teachers, nurses, therapists, advocates, and protectors. They learn medical terms they never imagined they would know. They celebrate milestones others might overlook, a first word, a step, a moment of independence and moments that shine brighter because of the journey behind them.

These victories may seem small to the outside world, but within these families they are monumental.

Inner Strength

1. When a mother stands up for her child’s right to education, she is defending human rights.  
2. When she demands access to proper care and opportunities, she is defending human rights.  
3. When she teaches her child that they are worthy, capable, and loved, she is defending human rights.
4. This is activism in its most powerful and personal form.
5. But these mothers should not have to walk this path alone.

Support Structures

As communities, neighbors, teachers, and policymakers, we must do more than admire their resilience. We must build a society that supports them. A society where disability is not met with stigma but with understanding. A society where every child can access education, healthcare, and opportunities without barriers.

Because true freedom is not measured by laws alone, it is measured by how we treat the most vulnerable among us.

Well Wishes 

To the mothers raising children with disabilities: Your strength does not go unnoticed. Your love reshapes the world in ways many people will never fully understand. Every sacrifice you make, every battle you fight, every moment of patience you show matters.

You are raising children who teach the world about compassion, resilience, and humanity.  In the eyes of those who see your journey clearly, you are nothing less than heroes.

This Tribute was written out of love by Mr. Sphiwo Xaba from South Africa

Tribute To My Mum Evelyn 

Mama, thank you for raising me.  I can only imagine how difficult and challenging  it was back in the years where there was no knowledge and information to raise me. YOU DID IT!!  You took the fights and stood strong.  I am forever grateful for the young courageous woman that I have become.  Kea Leboga Thank you.

Gratitude Note 

Thank you so much for taking your time to read. I cannot wait to share further exciting experiences with you.  Please kindly share this post with as many people as you can as it will help me reach out to the world.

 

Social Spaces - My Dating Experience

 

Out And About

I loved going out in my 20's.  My friends and I would go out on Friday evenings just to unwind and wrap up for the week. I would normally be the only one with albinism amongst my friends.  That particular evening, the house was on fire, the table was filled with lots of adult beverages, laughter, going to the dance floor here and there. I used to play it safe with adult beverages because my sight has limitations especially in the evenings.

I stood up to go to the restroom as I was preparing to hit the road.  Before that I ensured that I settled the bill for what I consumed.  One of the ladies had more than what her system could take and this placed us in a sticky situation.  All I heard was the waitresses saying that it's that table with a white lady and all of us ended up in the managers office to account for that bill.  From that day when we go out I always ask for the bill and make sure that everybody pays because I am the easiest to spot in a group.

Dating A Brown Skin Man

A partner preference is a personal choice.  My preference is dating brown skinned men as the saying goes that the darker the berry the sweeter the juice.

I've had to break up with a guy I loved in my early 20's because his family did not want to accept that I have albinism.  We were young and naughty, we continued and he promised not to report us to his family. I ultimately left because I knew that it will not go anywhere as I cannot change my being. 

Now that I am older and wiser it's easier to relate because there is awareness about us. I do not deal with explaining myself or seeking approval from others about relationships.

From Christiana

Christiana is a young lady living with Albinism. Her husband has albinism and they have three beautiful babies. 

Her short take on a partner choice is that she preferred males living with albinism because they share similar challenges as she had fears of explaining herself all the time she meets a new guy. She says "This calms my mind because we can easily find solutions for our family together".

Gratitude Note 

Thank you so much for taking your time to read. I cannot wait to share further exciting experiences with you.  Please kindly share this post with as many people as you can as it will help me reach out to the world.

Please read HERE Part 1 and Part 2 for the other Social Space blogs.

Please feel free to contact me as well as click the follow button on the Sidebar

Personal Development

Self Work

Working on personal development doesn't have to end at academics or at the workplace because it is a continuous process and one should always strive to be a better version of self. 

There's a few traits I have pondered on enhancing because with time I have seen the negative impact they have on my mental and emotional well-being.

1. Learning To Receive 

Growing up with my grandmother I observed a giving and a caring person. Giving to others is my way of expressing love to them (family, friends and colleagues), it just comes naturally.  

The opposite side of this is that I have struggled to receive anything.  Sometimes it feels to me that the person could have used the money elsewhere.  One day my mentor wanted to send me a gift, silly me!, I wanted to pay for the courier fee. She went right ahead to gently remind me of the self work the both of us are doing.

Now that I am opening my heart to receive, I am receiving meaningful gifts, getting to appreciate the generous givers in my circle and I am now aware that I am worthy of the gifts I receive although this is still work in progress.

2. Overthinking 

I am naturally a fixer of other people's problems. Thandi always finds a solution and this has led me to forever lingering thoughts. At points I struggle to fall asleep because I just think and think.

At one of my dental appointments, my dentist asked if we could have a discussion about something that he noticed inside my mouth. He pointed that he could see that there's a perfectionist in me and he sees this because people who grind their teeth are people who always work very hard and as a result of this my teeth are becoming eroded. I found this to be very interesting because how are my eroded teeth linked to my unstoppable thoughts.

To work on the overthinking I purchased a book titled "The Battlefield of the Mind" by Joyce Meyer. I must say it has helped my busy brain to calm down.  Every chapter gave me something to work on.  The best part is that it has biblical references that address a particular mental challenge that a person may be facing.

Parting Thoughts 

Dear reader,  what are you struggling with? I would like to encourage you to take time out and reflect on personal things you would like to improve on. Please take care of your mental health. I wish you healing. 

Gratitude Note 

Thank you so much for taking your time to read. I cannot wait to share further exciting experiences with you.  Please kindly share this post with as many people as you can as it will help me reach out to the world.

Please feel free to contact me as well as click the follow button on the Sidebar

Hear Us

Introduction 

Meet Nomthandazo Nkomo from Pretoria (South Africa).  She is a teenage girl living with albinism.  She wrote this article for a school presentation as September is Albinism Awareness Month.

Family Background

Growing up around family members who have the same condition (both my parents and my brother live with albinism) as I do has always been something I held close to my heart but after a few years on this earth, I realized that I was seen as a foreign creature.

World View About Albinism 

The world is a place that never seems to get better.  Sometimes I wonder what our ancestors fought for back then and if it was worth it.

Being different is not always a good thing. My skin, eyes and hair lack melanin, worst case my eyes cannot be still and no one is really bothered about this.  

Don't even get me started about the stares of others as confusion is painted on their faces when they come across us.  Something that is mistaken in today's society is that albinism is a condition, not a contagious disease.

Having albinism also means that I can't go to specific places around the world because people with albinism are still killed for their body parts for rituals.  As a girl, I am still vulnerable to many issues and being a black African girl living with albinism still feels like war.  

School Journey 

One memory still lingers in my mind of the time I was a small girl, excited to start my first day of school, only to notice that the other children were acting strange and distant towards me. In the end, I made a few good friends but one of the girls I was friends with started distancing herself from me. I asked why and she said, "My mom said I can't touch you or else my hair and skin will look like yours."This was the moment when I realized that the world hates different.

Throughout my school career, it was and still is a struggle to navigate when topics of race would be brought up.  I knew the question "Are you white or black" was going to pop up. It was hard navigating these types of questions especially when they had no idea about albinism.

Teachers didn't make things easier either, the number of times I had to beg them to remember the A3 papers I needed to see the questions so that I am reasonably accommodated in class.  I could have complained, but after a while, I decided to resolve the problems myself instead of waiting for my parents to take action. I hated the way it affected me and I completely lost passion for some subjects. 

I am at high school and I am enjoying it.  The teachers are better and understanding, I can ask for assistance and I will get help.

Lingering Questions 

1. When will the world finally see our struggles?
2. When will the blazing sun stop searing our skin?
3. When will others stop touching my pale skin?
4. When will parents teach their kids about us?
5. When will the world show us kindness?
6. When will the world hear us?
7. When will the world see us?

My Hope For The Future

This is the time the world changes.  Having a day when the world sees us and hears us is a day that we can rest from all the torment the world has put us through. All of these battles have taught me that Albinism is not a condition to be ashamed of but rather to be proud of.

Gratitude Note 

Thank you so much for taking your time to read. I cannot wait to share further exciting experiences with you.  Please kindly share this post with as many people as you can as it will help me reach out to the world.

Please feel free to contact me as well as click the follow button on the Sidebar

Meet Pastor Rabie

Introduction

My name is Rabie Titus Shilakoe known as (Pastor Rabie) from Jane Furse (South Africa). I am a last born of six siblings, the only person with albinism in the family which is amazing as I am a gift from God.  I am passionate about Christianity, I love God and I live my life for Him.  

I went to Siloe School, close to Polokwane for primary school.  Thandi and I met there as class mates.

Fatherhood

I have a 9 year old daughter.  She does not have albinism.  I raised her from the toddler stage which began with clinic visits as her mom and I are separated.  

At about 5 years she was very curious about how daddy looked like but she enjoyed it as she would brag to her friends that her dad is white and he is also a Pastor.  Lately she calls me Moruti (Pastor).  

We have a beautiful father and daughter relationship.  Whenever I call her before we hang up she came up with the rule that her younger sister should hear my voice so that she can also feel and experience the love she receives from daddy.

Life's Challenges

Family:  Growing up being the only person with albinism gave me too much attention and a lot of supervision from my family.  My daily questions or instructions were: "Did you put on your sunscreen?  Where is Rabie?  Don't forget your hat".  My every movevwas watched at close range.  Yes I was young but this irritated me a lot.

Family gatherings:  Extended family members did not know how to associate with me,  I struggled to fit in.  It always felt like I have to explain myself about my condition all the time.  This has put a lot of strain on my emotions because people are supposed to be understanding family members.   

Polygamy family set up:  My father had two wives, my mom was the younger wife.  I did not understand polygamy dynamics.  At some point I stayed with my dad and the first wife's family.  I felt excluded in that family.  They gave me a room outside while all the children had their bedrooms inside the main house. They would always pass sarcastic remarks which made it clear that I am not welcome in their family.  I only felt safe when my father was around.  

Integrating into the community:  I grew up in boarding school and the community was not familiar with me as they would only see me during school holidays.  People would always call me names but I would always laugh it off or disagree with what they called me as my mom gave me guidance on how to handle these encounters.  I found ways to diffuse the insults. I always participated in community activities like soccer, parties and other events.  Eventually they warmed up to me.  

My Victory Moments

We all know that people with albinism are looked down on.  This made me take good care of my skin and physical appearance. With time I have also learned to build my confidence.  I always speak life and believe in everything I want to achieve. Adding to that I give my best and have no room for self doubt.  

The wisdom and strategic approach I have learned, have opened great doors for me as follows:

Ministry:  Besides being a Pastor at my home, I also receive invitations to preach at different churches.  Even in our neighboring African countries.  I have preached in church gatherings with more than 500 people.

Mining Industry:  My company is contracted to service few mines.

Property Investments:  I have observed my property portfolio growth.  

Closing Thoughts 

I would like to encourage everyone with albinism to challenge themselves to do great things in their lives as we are changing the narrative and moving away from the old mindset and myths.  After all God has created us to fulfil a purpose on earth.

Please take care of your skin as albinism is beautiful.

Gratitude Note 

Thank you so much for taking your time to read. I cannot wait to share further exciting experiences with you.  Please kindly share this post with as many people as you can as it will help me reach out to the world.

Please feel free to contact me as well as click the follow button on the Sidebar

Meet Matsatsi

Introduction

My name is Matsatsi Semomo from Pretoria (South Africa).  I am a bubbly lady, full of energy and a go getter.  People describe me as "if never giving up was a person, that would be me".  

Growing up as the only child with albinism, I decided to do a research out of curiosity to see where these gene comes from. I was amazed to find out that I was the first and only one in the family.  I was a blessing to my family.  I have never let albinism to define me.  

I did not go to a special school as my mom did not want me to feel different from the community members.  

Boy Mom

I am blessed with three boys, my  first is a set of twins, then I had their brother.  I consider them to be triplets because they are 18 months apart. They do not have albinism however I still dream of a baby with albinism.  

School pick ups and drop offs become very interesting as other learners would expect a brown skinned mom to my boys. I am grateful that they are not mistreated for our skin tone differences.  

My boys do not fully understand the albinism condition however they embrace my uniqueness. This is their definition of albinism: when mommy was sleeping, we painted her white, gave her red hair and green eyes so that she is unique for us.  Talk about a creative mind from a child!  I find this cute all the time. They protect me and give me a lot of care.

Challenging Moments

Mockery at school:  Growing up with albinism was very challenging especially in primary school because some of my class mates would mock me since I had to sit in the front row for me to be able to see the chalkboard. They did not understand why I wore spectacles.  As a child wearing spectacles was challenging because of all childhood activities, sometimes I would forget or drop them and they would break. That meant my parents had to pay more for a new set.

The mockery and bullying made me cry a lot, it affected my confidence and self esteem until my mom sat me down and made me understand that she will not be there all the time to fight my battles. That was the day I decided to stand firm and leave the stigma attached to albinism alone.  I found myself.   

Sunburn: I had a friend who enjoyed peeling my skin after sunburn.  She would always ask me if it's not painful as she peeled the dead skin off.

Work place: People at work do not understand my condition (the low vision), I normally get questions like why am I too close to my monitor? 

On the other side I think my current employer tries to accommodate and understands the needs of employees with disabilities. They provide assistive devices to make work easier and when you work on site they provide sunscreen.  I had the biggest monitor in the office and my colleagues would always tease me for having a TV at work.  

Driving:  When I drive in the direction facing the sun, the sun blinds my eyes and it always feels like a  flashlight has just been put on which is destructive in many instances.

Moments Of Victory 

At school I used to participate in academic activities and I always won in those activities.  This gave me positive attention from the entire school. Ooh I love attention!

I studied Bachelor's of Business Administration, despite all the challenges I faced at university, I managed to complete my degree on time with 13 distinctions. This helped me secure two permanent employment positions and it also boosted and advanced my career path.

Last Thoughts

It is a blessing to live in technology times as information is everywhere if searched properly.  

Another great thing is that our government assists our albinism community with disability grants (CLICK HERE) and sunscreen.

Gratitude Note 

Thank you so much for taking your time to read. I cannot wait to share further exciting experiences with you.  Please kindly share this post with as many people as you can as it will help me reach out to the world.

Please feel free to contact me as well as click the follow button on the Sidebar