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:
- 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. - 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. - 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. - 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. - 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.