Small Children, Big Worries

My father died of V122I hereditary amyloidosis when I was 44. I found out I was a carrier for hereditary amyloidosis at the age of 46. What does that mean exactly?

Finding out I was a carrier for hereditary ATTR amyloidosis

Like a growing number of other families, I do not have adult children faced with the possibility of this hereditary disease. I have children. Children-children. Young.

My children were 4 and 11, respectively, when they lost their "Papa." My daughter, the eldest, had already lost her paternal grandmother at 4, so she was stoic, quiet, and, in my mind, almost too accepting.

Explaining a hereditary disease to young children

My son tried his best to make sense of why he could not run and play with his grandfather anymore and why he could not come back.

I explained it the best way I knew how. "Papa is in heaven. When you look in the sky and see the brightest star shining, that is Papa saying hello."

He carried that message for quite some time, and every so often he would say, "Mama, Papa is saying hi."

At 9, he cried because he felt he could no longer remember his Papa's voice.

When the questions about family health history got harder

In 2023, I began my annual visits for observation for this disease. This meant my children had a lot of questions. Where are you going? Why?

"Because Mama has a gene that matches Papa's. Every year, they check Mama to make sure I am okay."

Years into these explanations came harder questions. My son: "Are you going to die like Papa?" My now-teenage daughter: "Great, thanks for that mess," with the standard teenage sass.

Parenting and managing ATTR uncertainty

We know this is not a guarantee for them. And with all the developments in the field, even if they do inherit the variant, it does not mean they will have the same outcome.

But they still have to sit with it.

They are left sitting with two kinds of uncertainty: what this could mean for their own future and what it could mean for mine.

Today, I watch my son, now nearly 11, talk about his fear of growing up and watching his parents get older.

My children have a pain neither my husband nor I experienced at their age. We had our grandparents for many years. My son learned very young, through losing my father and never having the chance to know my husband's mother, that parents do not always make it as far into the journey with you as you might wish.

You cannot simply tell a child not to worry when life has already shown him why he does.

I watch my now 17-year-old daughter march through this world with a realism and acceptance about life and death that people twice her age do not have.

Genetic testing and raising awareness

Is that good? Is that bad? I do not know. All I know is that, from my view, I have always said children are little, not stupid. We might try to shield them from adult issues, but they still see, feel, and try to make sense of the world around them. They remember. They make connections. They worry.

The facts of their world as it is right now? They know about the possibility of hereditary amyloidosis, what it did to their grandfather, the journey their mother faces, and the unknown for them.

An adult child with this knowledge can decide to have genetic testing. They may be able to begin observation, and if symptoms develop, that may eventually lead to diagnosis and treatment. There is still uncertainty, but there are at least decisions they can make and steps they can take.

Young children are carrying a different version of that same uncertainty. They have the information. They may understand what happened to a grandparent and what could potentially affect a parent or even themselves someday. But right now, there is very little they can do with that knowledge.

The worries are real in both cases. They are just different. For young children, right now, it can be a world of information without solutions.

Why openness about hereditary amyloidosis matters for my kids

For me, though, openness about family health history is important, even if it is hard. My children growing up with this knowledge means that down the line, they will understand their family health history and may be able to make earlier decisions about testing, observation, and care that could help better protect their health and future in ways their grandfather did not have the opportunity to.

How do we manage in the meantime? I think, for me, it is openness. Normalizing that, as an adult or a child, it is okay to feel uncertain and even scared at times about our future. If we are honest, we all know tomorrow is not a guarantee for anyone.

It is acknowledging that children may understand and express their worries differently, but how we as adults address those worries matters.

It is reminding them that having hereditary amyloidosis in your family does not guarantee what your own future will look like.

And maybe understanding the fragility of life, even at a young age, helps to ground us in enjoying every moment life has to offer.

How we manage the fear together

We as parents offer comfort and support, but for me, it is also understanding that I do not have to have every answer. I can seek the help of mental health professionals who have experience with children to also support my children.

They deserve their own space to ask questions, to be scared, to cope, and to develop the tools they need to manage the world around them.

Children are little, but they carry things too. Their worries are not small just because they are.