Answering the Hard Question for Which No Parent Is Prepared

Eunice White avatar

by Eunice White |

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PDG and children

“Mom, can Fabry kill you?”

This wasn’t the first time this question was posed to me. The first time my child asked me, I was taken aback. It seemingly came out of the blue. So I did what all seasoned parents do: I mumbled something nonsensical and then changed the subject. Much to my relief, whatever I said to divert the conversation worked.

Weeks later, this question was posed once again by the same child, who does not have Fabry disease. What must be going through their head as they think of their siblings, their mother, and several extended family members who have Fabry?

This time, I felt only slightly more prepared. How do you really prepare yourself for a question like this from a small child? 

We were in the car on the way home from school, discussing some of the varying symptoms of Fabry disease. One child talked about the pains they have when they get a fever or become overheated from playing sports. Another said that this doesn’t happen to them and then asked if it would one day be a part of their life as well.

I tried to explain that although one might not suffer from these pains today, they likely eventually would. It hurt my heart to have to explain all these things to this child. Then, from the back seat, I heard the question again: “Mom, can Fabry kill you?”

I took a deep breath and explained that yes, there is a possibility that Fabry could be a cause of death because of what it can do to our insides. I also told them how thankful we are for the infusions that are available to help keep our bodies healthy. I talked about how important it is to stay active and to eat healthy foods.

We talked about how God created us, and that when He did, He numbered our days. He alone knows when our days on this earth are done. We can do everything that we know to be healthy, but ultimately, God is in control, and we choose to rest in this knowledge.


Note: Fabry Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fabry Disease News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Fabry disease.


Michael P. McVeigh avatar

Michael P. McVeigh

I think that someone who knows they have been stricken with Fabry Disease always has this same question in the back of their mind. Unless they are too young to understand. For me, I stopped worrying about how much time I have left on this planet and focus on all the wonderful things I'm doing in the present, because the future is not guaranteed. We can keep doing our infusions, or now the oral pills from Amicus Therapeutics, but inevitably we or no one else can predict how much time we really have left. The main thing is to remain positive, enjoy every minute we live and help others who have less than we do. In my opinion, this is God's ultimate plan for us with Fabry and everyone else for that matter!


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