The Challenges of Parenting With Fabry Disease

What is my job as a parent?

In thinking this question through, I came up with a few answers, but it’s not an exhaustive list. I am to protect, guide, teach, and love my kids. At some point, the protection I give them will lessen. They will be introduced to more outside influences, and my job will be to walk alongside them as they navigate the unknowns in life.

I find this true with Fabry disease, too.

Since confirming my own Fabry diagnosis and subsequently starting enzyme replacement infusions, I have never hidden or tried to pretend that this isn’t a part of my life. However, I believe children can be somewhat oblivious to the goings-on around them.

Just last month, our family traveled to another state to meet with a wonderful geneticist. That doctor helped us decide when our two kids should start treatment. This is a big decision, because treatment will interfere with their school, and the infusion process —which initially takes about about six hours — is a long time for anyone to sit still, especially kids!

Keziah, my 12-year-old daughter, was discouraged after the appointment because the doctor had gone over possible outcomes and statistics of Fabry disease if left untreated. Although she had heard this information before, I think that this time, she heard it with fresh ears, as if hearing it for the first time.

Although we don’t dwell on the “what ifs” of our health in the future, we also don’t keep it a secret from our kids. Keegan, our 6-year-old son, was oblivious to everything being said, and is largely unaware of how the disease could affect his future.

I love to see my children happy, and wish they could remain unaware of the hurt and pain that could become part of their own stories in the future, although this has started to creep into their lives in small doses. While it is not my job to protect them the rest of their lives, it is my job to guide them, advocate for them, and be a ready and willing shoulder for them to lean on and an ear to listen to them.

There are so many unknowns. I wonder how they will do with infusions when getting a simple blood draw is hard. Will their bodies react adversely to the infusions? Should we start them now, or can we wait?

At the end of the day, I return to the fact that God gave me these children — two who are learning to deal with a genetic disease, and one who is learning how to support and care for his siblings. God knew they would have Fabry disease, and he picked me to parent them. I know that life is full of unknowns no matter your circumstance, so I rest knowing who holds our futures and the paths we take.

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