This is the story of five-year-old Aubree Fox who has recently been diagnosed with hydrocephalus, stenosis, and an aneurysm in her brain. This slew of life-threatening diagnoses were all a mystery for the past two years. After first noticing symptoms such as headaches, vomiting, stomach pain, and moments of paralysis, Aubree’s mother Dakota began searching for answers. Unfortunately, she says both hospitals she went to were dismissive of their case, prescribing remedies which never worked and sending them home to cope on their own.
Thankfully, Dakota didn’t give up on her “mother’s instinct.”
The Journey to Diagnosis
Through the two year period of mystery Aubree was diagnosed with abdominal migraines as well as celiac disease, all which turned out to be wrong. She was given urine tests, blood tests, and an ultrasound, but never an MRI. This, her mother believed, could provide them answers.
This period filled with roadblocks went on for 22 months. Once, during this time, Aubree collapsed in the hospital’s own parking lot, and even then her mother’s request for a MRI was not appeased. It wasn’t until much later that doctors determined that this event was most likely a stroke.
Finally, on December 31, 2018, Joondalup hospital agreed to complete an MRI. Doctors were shocked by what they found and amazed that Aubree wasn’t suffering any disabilities as a result of the trauma in her brain.
Dakota’s message
Dakota hopes that by sharing her daughter’s story she will help encourage other parents in similar situations to trust their gut. It’s so important to be an advocate for yourself, even in a system like healthcare which is aimed to serve.
The problem with many rare conditions is that doctors can easily dismiss that type of diagnosis even if the patient’s symptoms match, simply because it is unlikely. This is especially true when the symptoms of the rare disease mirror that of more common ailments.
Sometimes it takes being more vocal than normal to make sure you’re heard.
On the other hand, Dakota encourages physicians to take a step back and listen more closely to their patient as an individual.
An Update on Aubree
Aubree had surgery in January of 2019 to relieve her brain of some of the fluid which had built up. As a result, she has stopped experiencing severe headaches and is no longer vomiting.
However, she still has an aneurysm to deal with. She has a few more tests to undergo before she will be cleared for that surgery.
In the meantime, she’s back at school, taking it “day by day” as per advice of her doctors. Unfortunately clinicians still aren’t sure of the cause of her ailments, and her physicians are now consulting with specialists overseas to try to get the family more answers.
If you would like to contribute to this family, you can visit their GoFundMe page.
You can read more about Aubree’s rare story here.
