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Finding a Balance Between Health and Quality of Life for My Son With a Rare Disease

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When you have a rare, unique, amazing, remarkable child with a rare disease and doctors at world-renowned hospitals are left scratching their heads when looking for a definitive diagnosis, there is no roadmap as to what to expect, no answers to your questions. The uncertainty of these facts bring up more questions than answers for the parents as well as the physicians caring for the child.

I’ve personally experienced this uncertainty.  My son is a rare “zebra” — he has a primary immunodeficiency and does not fit within any standard diagnostic set of tools the doctors have to identify these rare diseases. When doctors are in school they hear a phrase, “When you hear hoofbeats, think horses.” It is quite a fitting word, zebra, because they are so rare, just like the disease my son has.

When your child is rare, you not only have to gain a medical education on terminology very quickly, you have to weigh whether the risk of the treatments being proposed outweigh the benefits he will receive should he go through with them. My son has a laundry list of medications to which he has had adverse reactions and allergies.  Every new medication needs to be considered very carefully and monitored very closely. This is the case with many children, but most children don’t decline into life-threatening situations due to viral illnesses, bacterial infections or even allergies and adverse reactions to medications.

Every day we live with uncertainty about whether he’ll catch a cold and how that will affect his body. But we aren’t germaphobes. We realize we can only be as diligent as is humanly possible. We have the best intentions of keeping him safe, but we also have to balance that with providing him with a good quality of life.

Balancing having a medically fragile child who presents as an average healthy child can be a daunting task when you are well aware of how fragile his life is, but want to provide him with every joy possible and available to him. You begin to see him as a healthy kid when he is well. But we continually make decisions that we know have the possibility of impacting his health negatively. Going to the park, a fast-food play place, a sporting event, even a birthday party can make him very ill, even hospitalized.

While there was a time I was discouraged from even touching my baby boy due to his illness, I can’t imagine the emotional strain David Vetter’s mother, the original “boy in the bubble,” went through during his 12 years of life. Thankfully, medicine has advanced tremendously and my son is out in the world, but our decisions concerning his quality of life are not without consequences. Life is uncertain, and I will continue to balance giving my son the quality of life a typical healthy kid can have, while knowing in the back of my mind that my decisions can lead to serious health risks for him.

But isn’t that what every parent does, anyway?

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Originally published: November 16, 2016
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