Why I No Longer Feel the Guilt of Passing My Disease On to My Children


Since before my sons were born, I have carried the guilt of passing Fabry disease on to them. I have cried more tears than I believed possible. I understood that Fabry disease would be hard to live with, but I never planned for the guilt. How could I have prepared for that?

When my babies were babies and they would cry like babies often do, I would ask myself, “Are you crying because of Fabry’s or because you’re a baby?”

When my 4-year-old son asked if he could wear sandals over sneakers so his feet would only hurt “for one step,” I understood that I had waited too long to start therapy. I held back the tears as I nodded my head, “Yes.” He would have to start enzyme replacement therapy. My baby would have to have infusions from now on, until they found a better way. For every infusion I have prayed to God to please find a better answer. I have also thanked God that an answer exists.

I carry my guilt with me wherever I go. It is my constant shadow.

Finally, I have decided I must release my guilt. It is a burden that I can stop weighing down on my children. I would not have chosen to give Fabry disease to my children, and I do not want different children. Fabry’s is part of who they are, and they are perfect.

Today, I release my guilt. I am not guilty of giving this to them. I did not wrap it in a bow and make it a present. It is simply part of who they are, the way it is part of who I am. I love who I am and I love who they are. Releasing my guilt will take the weight off of their shoulders, as they are constantly letting me know “It’s OK, mom.”

It is OK. We are all OK. We are beautiful. We are a family. I release the guilt and look to the future. I am full of hope.

We want to hear your story. Become a Mighty contributor here.

Getty Images photo via SomeMeans


Find this story helpful? Share it with someone you care about.


Related to Fabry Disease

woman looking at sunset over the ocean

What I'm Thankful for After a Difficult Year With Lyme Disease

Everyone has certain years of their life that are more memorable than others, for whatever reason. 2017 has been one of those years for me. Since beginning the new year, I have frequently reflected on the events in my life that occurred in 2017. For me, 2017 had been one of those chaotic years I [...]
upside down picture of a 19 year old girl

Dear Reader, Here's What You Don't See About This 'Normal' 19-Year-Old

In anticipation of a new year and the approach of International Epilepsy Day, a day that binds this community together over a common experience, I sit down here to write about what people who have not walked in our shoes may not see when they meet people who live with epilepsy. Dear reader, what do [...]
Back view of one teenager girl thinking alone and watching the sea, winter or autumn day

Why These Two Words Now Shape My Life With Achalasia Disorder

I never expected these two words would ever describe my life, and now they have become a massive part of it in the last 11 months – “rare” and “incurable.” I was diagnosed with Achalasia disorder in November 2017, after six weeks of not being able to swallow solids or liquids. I was dismissed by [...]
Silhouette of a mother holding her son isolated on white background

What I Want Others to Know About My Son's Rare Syndrome

Most people know about Down syndrome, and that may be because it is the most common chromosomal abnormality. Have you heard of the most common chromosomal microdeletion abnormality? This condition is known by many names, but the one that geneticists use is 22q11.2 deletion syndrome, or 22q for short. Whereas Down syndrome manifests when there [...]