When the System Says No: A Mother’s Plea for Fair Treatment

From the moment Luke was born, he would scream and scream. All his milk would come back up, and he began to refuse the breast. We tried formula, but the same thing happened. He was hungry, would try to drink, then pull away and cry. I was told it was colic. I was told he was being “naughty” and that it was behavioural. I was told it was allergies.

We saw a gastroenterologist when he was 14 months old, and she performed a scope that confirmed EoE. It is a delayed reaction allergy that affects the oesophagus. It hurts him to eat.

We have tried every medication that is both affordable and approved for EoE. Although we have had two clear scopes since then, his symptoms still persist. We want to get him onto Dupixent, which is extremely expensive and not yet listed as a treatment for EoE in South Africa, even though it is recognised overseas.

What does “equity” mean in your story?

The hardest thing to access is medical aid support for his medication. We tried to motivate for them to cover his formula, which he desperately needed because he was not eating, and they put up a huge fight.

His immune system is low because it is constantly fighting the EoE, leaving little capacity for anything else. When he gets sick, even with something as simple as the flu, he ends up hospitalised. Medical aids are not being fair. The treatment is recognised as chronic overseas but not here. There has been no support.

Day-to-day life

The biggest challenge is getting my son to eat. Until recently, he did not even want to drink his specialised formula. He is on seven different medications, and sometimes they help and sometimes they do not.

I just need my son to be approved for this Dupixent injection.

Hope and strength

I am running on fumes. It is a disease that most doctors do not even know about. Rare Diseases South Africa gives me a small amount of hope and helps me keep fighting this fight.