Oliver's Zebra Journey

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
💚💗💙💜

04/05/2025

Day 4: Light It Up Orange

The first photo is from our challenge from last year and the second one is from today.

A lekker throwback!


The Ehlers-Danlos Society

03/05/2025

Day 3: Misconceptions I've heard

There are a lot of people who don't know what EDS is so they misunderstand a lot of things due to lack of awareness.

The one I've heard and hear the most is:
"But he doesn't look sick"

Others also include:
"Don't worry he'll outgrow it"
"It's not that serious, he's just double jointed".

This is why I try to raise awareness, because yes, he doesn't look sick every day. He doesn't sublaxe (partial dislocation of joints) every day, but something as simple as his toes sublaxing happens often.

Yes, he is "double jointed" and yes, he is "bendy" and he can do "funny things" that are out of the ordinary, but those things he does can cause permanent damage.

He has hEDS and it's more than just being bendy or double jointed. It's a life long chronic condition which he got from both his father and myself and looking back both our families have hEDS.

He doesn't look sick every day and he doesn't look like he's in pain every day, because this is his normal. He's never known anything else. This has been his whole life and he will have this condition for the rest of his life.

I still learn new things every day. As he gets older he can explain and describe a lot more of what he feels, but still not everything.

Living with EDS looks different for every person.

Some people need permanent mobility aids, some people have more severe complications and some people can manage it better.

We learn together and the more time goes by the more we realize what we thought was "normal" and what we thought everyone can do just isn't.

What I can show, I show, but things like the pain he has I can't capture on a photo. I can explain the sublaxations or the way his body is a bit unaligned, but you can't always see it.

If you don't know what to look for you won't know what you can see and that's okay, that's why raising awareness is so important. To teach people what they don't know.

In the images below you will see how he hyper extends.

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!

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,
💚🩷🩵💜

03/05/2025

On the 26th we had Oliver and I had the privilege of each receiving a from Rare Diseases South Africa NPO 120-991.

We also had the pleasure of going to a PiNSA gathering and spending some time with people who understand what we go through.

We went to the park afterwards and he just had to have some photos of him with his teddies.

Let's introduce them to you:

Baby (the sloth) was his original comfort toy. My mother bought Baby for him in 2020 and it's been a life saver.

Geoffy (the blue giraffe that Baby is attached to) was gifted to Oliver at our previous PiNSA gathering.

We got Thor (also attached to Geoffy and Baby) from Food Lover's Market a year ago.

Ollie Bollie (the yellow and green giraffe) is the rare bear that he picked on the 26th.

Zee (the Zebra) is my rare bear that I got to pick and I REALLY wanted a zebra, but Oliver claimed it as his own.

Jaffy (the light and dark blue giraffe featured in the last couple of photos) Oliver won in the PiNSA story competition last year.

Pink Panther was knitted by my amazing granny.

Oliver insists on them sleeping in bed with him. There are a couple which you can't see clearly on the photos like Slothy (he loves sloths and pretends to be one sometimes 🤣), Bokkie (as in the Springbok mascot teddy that he got for his birthday) , Connor (a Mister Bear Brown teddy that I won for him 5 years ago) and a pillow with a duck face on it called Ducky that I bought for him when he was a baby.

Who would've thought that him getting to pick his rare bear would have this effect? 🤣

We are extremely blessed to be part of .

Thank you Lord for giving Oliver companions that comfort him.

Zebra love,
💜🩵💚🩷

03/05/2025

If you're wondering why this page has been so quiet: March was a very busy month for us.

Mister grew out of his insoles again so we had to go get some new ones for him. He also figured out some new "party tricks" that he can do with his fingers that caused inflammation which we had to have looked at.

Then he had a little trip to the hospital at the end of March.

While he was admitted he finally had his tonsils and adenoids removed! We planned to take him 3 years ago, but then life happened and now I'm glad we waited, because we got to get it done by an ENT that Dr du Plooy knows and he did a fantastic job! I was very much at ease knowing that she was around and I knew that if she needed to she would advocate for Oliver.

He was an absolute CHAMP when he had to get his bloods drawn and his drip placed!

Like many other chronically ill people he has trauma from previous hospital visits. It's always so traumatic getting his bloods drawn. At the very least we have to get his bloods drawn twice a year to see what his immune system looks like, because of his immunodeficiency.

Usually it takes a couple of people to help pin him down and no distractions work, but this time I sat on the procedure room bed with him on my lap. He had his headphones over his ears, blasting Hard Fought Hallelujah by Brandon Lake and Jelly Roll (his current favorite) and although it was still not a fun experience I was the only one holding him.

The staff at Mediclinic Midstream are absolutely amazing! ONE prick and they had drawn bloods and placed the drip!

During his admission we went to visit his favorite receptionist at Dr Magriet Du Plooy Consult's office and he even drew a picture for her. Bonus - she gave us A LOT of useful tips for his recovery after his operation and they helped sooooooo much. He had a speedy and full recovery and when I was discouraged while he was recovering at home she gave me some more advice. She even offered for him to use a wheelchair while he was admitted for going outside when he had too much pain in his feet. He LOVED it!

Often times people with chronic illness or mobility issues feel ashamed to use mobility aids like canes, walkers or wheelchairs, but if it gives you the opportunity to experience life to the fullest take Oliver's approach - just do it 🤣.

This child has so much admiration and compassion for people with mobility aids. We saw 2 people in wheelchairs at the shop today and he only stared because he also wants one 🤣.

He even got a visit from the Physiotherapist that helped us just after he got diagnosed with hypermobility while he was in hospital. It felt like we came full circle!

He also got to see a rheumatologist. What a lovely doctor! He had been having some issues with pain again and I was afraid it might be arthritis. She referred us to a Biokinetisist to help us to strengthen his muscles as they have to compensate for the loose ligaments due to the hypermobility.

Of course he insisted on being wheeled out in a wheelchair after being discharged from the hospital.

Making the appointment at the Biokinetisist was so fun and the receptionist and I had some good laughs. We got an appointment super quickly and easily!

He had his evaluation with her this week and she confirmed once again that his hypermobility is, as we've heard a couple of times, really bad. She says he's within the top 5 most hypermobile that she's seen.

I now refer to him as my Bisghetti (he can say spaghetti, but refuses to). He's as loose as a noodle 🤣.

The plan going forward is for her to give us an at home exercise plan. The nice thing is that she incorporates what he likes and she listened so attentively.

He said he wants to be as strong as a body builder so she will incorporate some exercises with 1kg weights - just for him! We need to get him a new anti-burst ball though, because the other one is too big for him.

What I also appreciate is the fact that she takes time to explain everything to me.

With our next visit she is going to go through the entire plan with me and show me how to help him.

She also plans to keep the program short as she understands how exhausting it is for people with hypermobility. She also said that he only needs to do the program 3 times a week to allow his body to rest which I appreciate.

It's like we just hit the jackpot with his current care team!

We have too many blessings to count and the amount of miracles we've seen is just absolutely amazing!

Thank you God for everything!

Zebra love,
💜🩵💚🩷

03/05/2025

This is Oliver seven months apart.

He has successfully completed the CureHealth GBSI protocol!

In the beginning it was nerve wrecking, because we had to hope and pray that he wouldn't react to any of the supplements and by the grace of God he didn't react to anything!

Dr Magriet Du Plooy Consult has been with us every step of the way. Since we went to see her for the first time in August 2023. She has never left our sides. She has been fighting for a better quality of life for Ollie just as hard as we have. We thank God for sending her our way.

Her receptionist is also one of the sweetest people I have ever met! It's always a pleasure calling the practice and having a quick chat with her. She remembers Oliver like she's known him for years and always brightens up his day when we visit.

Thinking back it's almost unimaginable what we've been through and how amazing these last months have been.

In March 2023 and 2024 Oliver had reaction upon reaction and we dreaded having to take away more and more foods that he could no longer eat.

Dr Margriet's plan was never to mask his symptoms with excessive amounts of medication, but instead her plan was to see how many foods she could get back for him.

She has (and still does) guided us through this journey to the best of her ability. Not just with the MCAS, but with all his conditions. She ACTUALLY listens and doesn't gaslight a patient like many other doctors do.

Oliver has had no food intolerance reactions since he started on the protocol and his asthma is 100% under control. His eczema is also sooooooooooo much better! Issues we didn't even know he had (stuff which we though was "normal") also cleared up.

He was on antibiotics ONCE while being on the protocol. I remember him having to be on antibiotics at least once a month last year.

I really wish the protocol was available when he was a baby, because of how bad his colic was. The testimonies are just amazing!

To the CureHealth team: We appreciate you more than you'll ever know. I will 100% recommend anyone to use the GBSI protocol. It is absolutely life changing.

Thank you Lord for a better quality of life for Oliver. Thank you Lord for sending these angels on our path. Thank you Lord for hearing our cries and answering our prayers. Thank you Lord for being a God of love.

Zebra love,
🩵🩷💜💚

03/05/2025

28/02/2025

Happy Zebra Day!

Mister Oliver got his glasses today!

What a good day it was.

Thank you God for blessing us.

Thank you for everyone's support today!
Zebra love,
💜🩷🩵💚