We live with uncertainty daily, coloured with hope for a miracle.

Hi There

This is our story…

One November morning in 2019, my daughter woke up, screaming and crying that she has stomach pain, she is known to be a drama queen – like most girls 😊, and therefore I wasn’t sure how serious this stomach pain is, I took her to our GP as soon as they opened, our Dr examined her and couldn’t find anything wrong, except for a small lump on her upper arm (Left arm) He suspected it to be due to a possible spider bite. He referred us to her Paediatrician who agreed that its possibly a spider bite, however this lump never went away.

We kept going back and forth to the paediatrician that just kept saying to monitor it and as long as she doesn’t have any other symptoms that he isn’t really worried about it. Eventually our GP said he doesn’t agree with our paediatrician and he referred her to a general surgeon, from there we were sent for an MRI and still they were not sure what this lump was.

The general surgeon referred us to a neuro surgeon as he suspected that this lump had something to do with her nerves. The Neuro surgeon then sent her for a CT scan to be done, they had her arm up, next to her head when the CT was done, and then they saw she has 2 “lumps” in her brain as well, it turned out these “lumps” are aneurysms. “An aneurysm occurs when part of an artery wall weakens, allowing it to abnormally balloon out or widen”

Our daughter was then referred to the neurovascular intervention unit. She was hospitalized twice and underwent so many tests, (blood tests, genetic tests, MRI’s CT’s and a pet scan) they discovered more aneurysms (4) in her renal arteries.

We still don’t have a diagnosis as to why she has these many aneurysms, due to the aneurysms close to her kidneys she has high blood pressure which she is receiving treatment for.

The Dr’s are still discussing and consulting before they can decide on the way forward as they suspect that she has a very rare vascular disease and that surgery might be risky. They also don’t have any similar cases to refer to, she is the first case like this they have ever dealt with.

We are very stressed and concerned and pray everyday that our daughter will be okay.

Aneurysms, especially in the brain can be life threatening, she has GIANT aneurysms.

My daughter just started Gr 1 last year, she did so well, even though she missed so many days of school, not only due to covid but also due to the numerous hospital and Dr’s visits. Rare diseases FB page has helped her and us as parents, to assure us there are a lot of people also going through tremendous struggles, and that we should be grateful for the time we have with our loved ones.

She also presented with a horner syndrome due to the aneurysm pressing on a nerve. This has fortunately subsided.

We are seeing a vascular surgeon shortly, due to the aneurysm on her arm that started to complicate causing her pain and swelling.

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