Oliver's Zebra Journey

Oliver's Zebra Journey Join us on the journey of a special Zebra with an immunodeficiency and autoimmune diseases..

28/02/2026

🌍💜 Today we stand with the 300 million people living with a rare disease. We are united with their families, friends, caregivers, advocates, and the medical professionals, researchers and organisations that working tirelessly to build a more equitable future for our community.

Together, we’re showing our colours, raising awareness, and inspiring change by talking about what equity means to us.

Thank you to everyone who’s taken part, whether you’ve lit up your home, shared your story, joined an event, or supported someone you love. By standing together we’re proving that our community is strong, united, and truly more than anyone can imagine. ✨

👉 Learn more and discover ways you can still get involved: https://go.rarediseaseday.org/NEWS

05/08/2025

Please join us in praising the Lord for our friend's Prayers for Esmae' Denae miracle day!

Es and Magz, we've waited so long for this day and are so, so grateful with you for this miracle.

Never stop believing.
💙💜💖💙

05/08/2025

Celebrating our 2nd year on Facebook. Thank you for your unwavering love and support!

Zebra love
💚💗💙💜

Day 2: My Diagnosis Journey.Since he was a baby Oliver had some gastrointestinal issues. He was breastfed and would have...
03/05/2025

Day 2: My Diagnosis Journey.

Since he was a baby Oliver had some gastrointestinal issues. He was breastfed and would have the worst stomach ache whenever I ate onion and chicken.

Upon consulting his then pediatrician we agreed that I would just cut those foods out of my diet.

At age 3 Oliver would start getting sick a lot more often and we had to take him to the doctor at least every 2 weeks with tonsilitis, eye infections or the flu.

We also noticed him getting allergic reactions to random things like strawberries and oranges.

The doctor we went to at the time sent us for blood tests to check for allergies. When the results came back it showed that he was allergic to nothing. The doctor just advised me to keep him away from the foods he was reacting to.

This was very concerning to me as the list of foods he reacted to started getting longer very quickly and it felt like I wasn't being taken seriously.

We were referred to an ENT as he kept getting tonsillitis and I raised my concerns with him regarding the allergies. He sent us to get a skin prick test. The results showed nothing - AGAIN!

Eventually, after months of struggling, we got referred to an allergist by a new doctor that we went to.

The allergist repeated the skin prick test and it came back with nothing again (except for minor allergy to cats). After we got the results and had a long consultation with her she told us that Oliver has MCAS (Mast Cell Activation Syndrome) and he is hypermobile.

At the time it was all foreign to me!

She also gave us a new referral for blood tests and said when he has a reaction again to take him to hospital.

Before we could get the blood work done he had another reaction and we took him to the hospital.

When she called me with the results I was blown away. Not only did he have this MCAS thing and hypermobility, but we also found out that he has Salicylate Allergy and a primary immunodeficiency.

She started him on treatment for his immunodeficiency which was prophylactic antibiotics that he had to take 3 times a week and antihistamines that he had to take daily. She also prescribed Betadexamine for when he got allergic reactions.

We were then told to add a dermatologist to our current treatment team. He then diagnosed Oliver with Atopic Eczema and Skeeter Syndrome (a severe reaction to mosquito or other insect bites). He gave us ointments to help with reactions and a cortisone mixture that we had to apply twice a day over Oliver's body for the eczema.

With our next consultation with the allergist she mentioned that we need to see someone who can help us with Oliver's immune system and she also referred us to his current pediatrician.

She said "I have a colleague that has recently come back to South Africa after working in Canada. She knows a lot about MCAS and will definitely be able to help you."

We were so overwhelmed having received so many diagnosis and not knowing which condition to start treating first so the hypermobility completely slipped our minds.

We staggered appointments with the doctor that was to help us with Oliver's PID (Primary Immunodeficiency) and the MCAS doctor.

Both of them confirmed that Oliver is hypermobile.

The "MCAS Doctor" Dr du Plooy then started treating Oliver. He was admitted to hospital with an ear infection and while he was there he had more blood tests done. He also had an x-ray of his adenoids, because of our prior issues regarding his tonsils and adenoids.

As she noticed that he has hypermobility she also ordered a visit from a cardiologist who thankfully confirmed that everything was fine with Oliver heart and that he has cental autonomic dysfunction.

She also sent a physiotherapist for a consultation. The physio confirmed that he was extremely hypermobile.

He was then referred to an orthotist by his "MCAS doctor" and got his first insoles.

She also did her part in encouraging me to do research about hEDS and told me about the link with MCAS. Now I know a lot more (obviously) so now the whole picture makes so much more sense.

So in less than a year we walked out with a whole list of diagnosis for our 3 year old son.

The amount of gaslighting I received from the doctors we saw early in our journey is astounding! "You're just a paranoid first time mother" is one line I'll never forget.

I often find myself thinking where we would be today if I had listened to comments like that....

We thank God that he was able to be diagnosed so young and that he has such an amazing team of doctors now!

The month of May is EDS/HSD Awareness month.Day 1: Meet Me.This is Oliver.He is 6 years old and lives with hEDS (Hypermo...
03/05/2025

The month of May is EDS/HSD Awareness month.

Day 1: Meet Me.

This is Oliver.

He is 6 years old and lives with hEDS (Hypermobile Ehlers-danlos Syndrome) and some of the comorbidities that comes with it.

It affects all aspects of his life.

Throughout this month we will be sharing Oliver's journey to raise awareness for EDS.

I am a big advocate when it comes to raising awareness, because three years ago I had absolutely no idea what a rare disease was or how it would change our lives.

If you know me then you know I love talking so stay tuned to learn a lot!

Zebra Love,
💚🩷🩵💜

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