Two of my sons share what it’s like having three siblings with Fabry
A columnist interviews her sons Dominic, 22, and Thomas, 17
Written by |
As a columnist for over three years, I have chronicled my family’s journey with Fabry disease by focusing on the experiences of three of my five children who inherited the Fabry mutation from me: twins Michael and Anthony, and Marisa. For this column, I wanted to give a voice to my other two sons, who live healthy lives but have an intimate understanding of the disease because of their siblings.
Excerpts of my interview with Dominic, 22, and Thomas, 17, follow.
SV: What’s your earliest memory of realizing your siblings were different?
DV: When we were kids, playing football in the yard. [Michael and Anthony] just could not handle the heat and humidity, and they would complain about their feet.
TV: Since we all worked together landscaping, I remember the heat started to affect the twins, and they couldn’t work as much with us.
What were the most obvious symptoms you witnessed your siblings going through?
DV: Exhaustion from heat, cramps [in the hands and feet], and weird dietary things.
TV: That they can’t handle the heat. I remember one time when we were on a job for VanVickle Bros. Landscaping, and Michael was weed-whacking in the front yard and passed out! It happened just as our client was driving by him. I had to run up a hill to get Dom to drive him home. I was worried because the lady got out of her car, freaked out, and said, “He needs help.”
How did you know what they were experiencing, and how did you respond?
TV: I could tell by watching them sometimes, but I also heard them talk about symptoms like being sensitive to temperatures, the burning or cramping in their feet, and not sweating. Marisa has often complained about her stomach pains. I try to ask, “Can I do anything?” When someone’s in pain, you just kind of want to help, but you can’t help Fabry.
What was it like for you when your siblings had to receive enzyme replacement therapy?
DV: I didn’t like thinking about it. I know they didn’t like thinking about it or it being known or talked about.
TV: It was hard to watch my big brothers get enzyme replacement therapy and have to be treated by a nurse in our living room. And Marisa didn’t like it at all.
Did you ever feel your needs were secondary in your parents’ eyes compared with your siblings with Fabry?
DV: No.
TV: I guess so. Parents are more sympathetic to the more needy children. Like they’re more lenient toward Marisa, because she doesn’t feel good.
Do you remember getting genetic testing, and were you worried about your results?
DV: Not worried! Because I had seen what it looks like to have Fabry, and it was evident that I did not have that.
TV: I remember spitting in a tube. I wasn’t worried, because I sweat.
How have you supported your siblings with Fabry?
DV: My trick is to treat them like they’re normal people. I guess at Grandpa’s pool, if Michael’s like, “I don’t want to get out of the pool, can you grab me that?” I would get out and grab it for him. I’d do it for anyone, but the reason he asks me to do it for him is because of heat intolerance.
TV: If ever there’s an outdoor job, they would ask me to do it, and sometimes I’m happy to. Sometimes it’s annoying, but I know it’s worse on them than me.
What is the biggest lesson you’ve learned from your siblings having Fabry?
DV: How lucky I am.
TV: I was lucky not to get it.
How does Fabry disease affect your life in our family?
DV: For us guys, it’s more like a standpoint shift. My brothers and I know that they could have a shorter lifespan due to Fabry or pass it down to their children, and that’s something you have to think about in any sort of relationship.
TV: Sometimes they don’t feel well after certain things they eat, so it affects the food we have in the house. Also, since they won’t want to do certain activities in hot weather, it might affect things we choose to do as a family.
What advice would you give someone who has a sibling diagnosed with a rare disease?
DV: Don’t treat them differently. Don’t talk about it as much as possible, because they don’t want to hear about it. But if you know they’re going through something, just help them. Just be there.
TV: Be understanding if they have a random pain.
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, and are intended to spark discussion about issues pertaining to Fabry disease.
Leave a comment
Fill in the required fields to post. Your email address will not be published.