My Daughter Is My Hero

Eunice White avatar

by Eunice White |

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I can count on one hand the number of people I consider my heroes. One of them is my 12-year-old daughter, Keziah.

I interviewed her a few weeks ago, and I wonder if any of her views have changed since then. For two weeks, I watched her play tennis in the heat at camp for several hours a day. For some, that’s no big deal, but for people with Fabry disease, it is painful. 

Today, she played in her first tennis tournament, and my heart simultaneously broke and filled with pride as I watched her work through the pain.

Keziah, 12, competes in her first tennis tournament. (Photo by Eunice White)

I know what it’s like to subject oneself to the brutal heat of summer while dealing with nearly constant pain in the hands and feet. I know what my daughter was feeling. Seeing tears trickle down her cheek brought tears to my eyes.

My son, Keegan, 6, who also has Fabry disease, dries his sister’s tears. (Photo by Eunice White)

Perhaps for the first time since my daughter’s diagnosis, I became angry that she had to have this disease. Thoughts swirled around my head as I watched her play. Why can’t she be like a “normal” kid? Why does she have to suffer? Why does she have to hurt and have her energy zapped? Why did I have to pass this on to her?

As these thoughts ran through my head, I reminded myself that she was given this disease for a purpose. I don’t know what that purpose is, but I know the Lord will use it to mold and shape her into who she was made to be. Maybe she will have more compassion toward others who suffer, or build more endurance and perseverance, or perhaps it will drive her to having a closer relationship with her heavenly father.

Time will tell how this disease will affect her in the future, but I’m confident she will grow and learn from life’s difficulties. Isn’t that when we tend to do the most learning? When life is easy and carefree, we aren’t pushed to see what is on the other side, to see what else we are capable of.

I am thankful for my daughter and her courage to continue on when circumstances were painful and hard. I am thankful for her reminder to me to never give up, even when the going gets tough. I am proud to call my daughter my hero.

Keziah ends the day with a smile. (Photo by Eunice White)


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.


Peggy Steinley avatar

Peggy Steinley

Thank you so much for your article on your 12 year old daughter. My granddaughter was confirmed having fabrys disease a few months ago and she is 13. She talks about it with me and has such a positive attitude. I myself have fabrys and both my son and daughter have it. I am so glad she feels comfortable talking to me about it. My granddaughter is my HERO. She has been playing on a traveling Volleyball team for 2 years and I can relate to the pain she is enduring. Her mom who is my daughter is an amazing mom to all 3 of her children so she is definitely my HERO also!!
Thanks again.


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