“Oliver Grobbelaar was born pre-term in 2019 and seemed perfectly healthy.
At some point we realised that he had severe stomach cramps when I had onion and I breastfed him. The doctor advised that I cut it out of my diet as it might have bothered him due to severe colic that he had. When we introduced him to solid foods we quickly realized he can’t tolerate chicken or onion. He was also developing rashes when being exposed to these foods. We simply avoided them with him and he seemed fine. He got sick more often than other children his age would, but never to the point where he would have to be hospitalised.
In March 2022, shortly after his 3rd birthday we noticed he was starting to react to a couple of different foods. He would react to anything from strawberries and oranges to nuts.
We took him to the doctor and was referred for allergy testing. All the tests came back negative. The advice from the doctors was to just eliminate the foods he couldn’t tolerate and to treat the reactions, but we didn’t have any diagnosis or any idea of what he would react to next.
Finally, after countless doctors and sleepless nights we were referred to an Allergist in September 2022. We did another skin prick test with all negative results.
Oliver was then diagnosed with Mast Cell Activation Syndrome (MCAS), Hypermobility Spectrum Disorder (until we can do genetic testing which starts at R5000 to confirm hEDS (which includes chronic fatigue syndrome (CFS) and Central Autonomic Dysfunction). He also has eczema, asthma and allergic rhinitis. After some testing we also found out that he has Salicylate Intolerance and Specific Antibody Deficiency (SAD) which is a Primary Immune Deficiency. And the latest – he has Skeeter Syndrome (he’s allergic to mosquitoes and may also be allergic to bees).
The MCAS and Salicylate Allergy means that he has severe intolerance to a whole lot of foods and the list keeps growing as we go. He also can’t use any products containing SLS. When he has a reaction he has to use Betadexamine (5ml 3x per day for 3 days).
His MCAS was no longer under control due to the negligence of a daycare provider who kept feeding him foods that he can’t tolerate. Oliver has since been removed from her care and now stays home with me for the rest of the year. We finally gained a bit of control due to increased dosages of medication that he started late August.
After trying other methods of treatment we, along with his doctor, have decided to give Polygam a try to see if that won’t help with his immune system. We are currently waiting for approval from the medical aid for monthly infusions in the hospital.
So we were referred to a Pediatrician who recently came back to South Africa from Canada and specializes in MCAS. We had a consultation with her on 15 August. We also saw a Professor that day. Both of them confirmed that he is extremely hypermobile and he has severe low muscle tone. He was admitted to Midstream Mediclinic for tests, sonars and an X-ray of his adenoids, because he’s been congested for about 2 months now. We’ve been told it won’t completely clear up until he has Polygam. We need to see them again for full analysis of his blood results.
He was seen by a Physiotherapist in hospital as well who told us we need to see an Orthotist. We have had 2 consultations with him. At the first consultation he told us that Oliver needs to wear hiking boots to protect his ankles and at the second consultation we get his insoles for the hiking boots. The only hiking boots we managed to find was K-Way, because the other brands don’t make a small size 13. They cost us R700. Between the first and second consultation, Oliver’s heel subluxated, causing more damage to his left foot. We are seeing him again on 6 October and if the insoles haven’t at least helped, we will need to look at AFO’s or SMO’s. We are still unsure what the medical aid will pay of the R3500 for the insoles.
He is currently seeing a Physiotherapist who would like to see him weekly (R800 per week) due to the severity of the hypermobility and extremely low muscle tone, but we can’t afford to see her weekly so we see her once a month and then we do a home-based program with him daily.
We are highly overdue with a visit to his Dermatologist which will cost R800 cash.
My husband travels a lot for work so transport is usually difficult to figure out. Thankfully I work half day from home so I don’t always have to take off to take him to appointments. My husband can’t put in leave for every appointment and his compassionate leave is exhausted.
We are working with a Dietician on a meal plan, but the food is extremely specific and expensive. We also need to give him supplements (we are still waiting for the list from the Dietician).
We need to take him to a Play Therapist to help with medical PTSD that he struggles with and to an Occupational Therapist to help with his low muscle tone. He will need to go at least weekly in the beginning.
His medical aid is currently depleted so they are no longer paying for visits to his doctors and they are also no longer paying for acute medication for him. (Some of his medications are not approved for chronic benefit). The cost of seeing the Professor is R2500 and the Pediatrician is R1350.
We are hoping to raise money to help pay for him to go to the new Specialist, to aid in paying for consultations with his regular Pediatrician, medicine and foods for his special diet.”
Please open your heart and support our fundraiser for Oliver by purchasing his “Oliver`s Journey” bracelets. All proceeds are donated towards his ongoing medical care and expenses where needed – together we CAN make a difference in this precious boy`s life!
Alternatively, please consider a donation, any and all donations welcome. REF: Oliver Grobbelaar.
Fundraising for Oliver Grobbelaar
Over`s Journey Bracelets
“Oliver`s Journey Bracelets” consist of wooden beads with silver and diamante fillers.
1. Mint and pink with zebra charm.
2. Mint, pink, white, purple mix with Hope-Awareness Ribbon and Believe charm.