Family Pride’s Blog

LGBTQ parents face unique challenges in keeping their children safe and healthy. Bruce Steiger and Rick Karl are currently seeing their 15-month-old daughter, Krystie, through a dreadful procedure in the hopes of improving her life. Krystie suffers from Tay Sachs Disease, a progressive neurological genetic disorder. Children with Tay Sachs rarely live beyond the age of five. The experimental procedure Krystie is undergoing involves chemotherapy, radiation, and a stem cell transplant—in essence, a total blood system replacement.

Bruce and Rick asked to share their story with the readers of the Family Pride Blog. They want to raise awareness of Tay Sachs and contribute to the large community of parents taking care of children with devastating illnesses. And as gay dads, they want to share how they’ve educated doctors, nurses, and other healthcare providers about LGBTQ families while fighting for their daughter’s life.

In the course of caring for a sick child, no parent should have to spend an ounce of extra energy dispelling myths or fighting prejudice because they are LGBTQ. But the reality is that LGBTQ parents must do this all the time, even as they go through some of the most personal, harrowing experiences of their lives.

There are things we can do before tragedy strikes to keep prejudice and discrimination out of our family care. Here are five things you can do now to create a better healthcare environment for your family:

1. Keep family relationship paperwork on you. If you have proof of partner status, parents rights, powers of attorney, adoption decrees, or any other form of relationship recognition, make sure it’s there in case of emergency.
2. Educate your healthcare providers (doctors, pediatricians, local hospital staff) about your family. If they know you’re an LGBTQ family ahead of time, they’re more likely to be responsive to your needs.
3. If the creation of your family involves assisted reproduction, research to see what genetic illnesses are screened for, when, and by what triggers. Every family has to reach a comfort level when it comes to the degree of pre-screening that needs to be done. Knowing as much as you can as you begin this process will help you navigate these difficult waters.
4. If you’ve transracially adopted, investigate to see what illnesses and health problems are more likely to affect your child than others. Some illnesses are more likely to affect certain racial/ethnic groups. Understanding how certain diseases impact certain communities will allow you to be better prepared.
5. Visit the Gay and Lesbian Medical Association for resources and information on LGBTQ-competent healthcare providers.

And still, no amount of preparation will make the personal struggle less difficult. To read more about Rick, Bruce and Krystie, visit Krystie’s Caring Bridge homepage.

Thank you, Rick, Bruce and Krystie, for sharing your family with us. Our thoughts are with you.

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