The Most Important Advice I Can Give to Rare Parents

The single most important piece of advice I want to share with all new parents managing their child’s rare disease is this: never stop looking for answers.

Instinct is terrestrial and we often overlook its eerie silhouette in favor of a safer figure. We are taught early on to forfeit our sixth sense for the logic of experts. Don’t do it. Do not default, surrender or play down what hundreds of years of survival have bred into your DNA. Instead, fight for your child’s full diagnosis.

As rare parents, we understand the personality of our child’s etiology. We see the evolution, wrongness and the sadism that coincides with creatures like organ failure, cancer and progressive conditions. It is our perspective that must be researched, understood and called upon as complimentary to traditional medicine. Shutting out this unique knowledge source is a mistake that can costs lives.

The lesson is simple: never dismiss the sophisticated understanding of your child’s medical complexity.

Keep pushing doctors.

Keep advocating for that test, that procedure, that referral.

Keep looking for answers to the undiagnosed.

Keep asking questions.

Keep reading.

Keep correcting specialists. 

Keep watching your child.

Keep listening to your gut instinct until you have the answers.

We recently got more answers, not because they were discovered, but because they were carved out, over time, by a tired parent. Red’s medical constellation has grown: branchio oto renal syndrome (BOR), chronic kidney disease (CKD), gastroesophageal reflux disease (GERD), patient  ductus arteriosus (PDA), and now avascular necrosis (AVN). Her organs and bones are dying. We feel that the weight of our findings have been far less crushing than being orphaned by the undiagnosed, misdiagnosed or under-diagnosed.

Keep looking. Keep going. Keep hoping.

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