Meet Katie Grace and Savanha Groebner!

When Katie Grace was 5 and her sister Savanha was 9, Katie Grace was diagnosed with pulmonary hypertension. We asked Katie Grace and Savanha to share their experiences living with PH.

This interview appeared in the Spring 2013 Pathlight.

Katie Grace and Savanha GroebnerKatie Grace and Savanha Groebner

Where do you live?
Clayton, California

How old are you both now?
Katie Grace is 10, and Savanha is 14.

How has PH impacted you and your family?
Savanha and Katie Grace: We had to move away from our home, friends and family to be closer to Katie Grace’s pediatric PH specialist. But now we have made a lot of friends here. We have a new home, and we have had opportunities to do things we never would have had if we hadn’t moved.

Tell us about some of the things you've done to raise awareness of PH.
Savanha: I run in races, write papers for science class and have worked with friends on local news articles explaining PH and the people it affects. Each year I have dedicated my birthday to raising both money and awareness.

Why is fundraising important to you?
Katie Grace: I want a cure for all my PHriends. I want to keep other kids from having to do the things I have to do to stay healthy.

Savanha: I had a friend who I met when my sister was diagnosed who lost her battle with PH three years later. I know other PHers, and I want to do all I can to keep this from happening to my sister and them.

What message do you want to share with other kids who are interested in raising awareness of PH?
Katie Grace and Savanha: It is really very easy. Find out if your school will let you announce Pulmonary Hypertension Awareness Month in November. Choose that month to write a science paper, send a letter to your mayor and ask him or her to sign a proclamation, invite your local town paper to write about PH Awareness Month. We like to fundraise, but more importantly we want people to know the signs and causes of PH so that they can be educated enough to help others.

What's the most important thing you think other kids should know about PH?
Katie Grace and Savanha: PH is not contagious and does not prevent us from being a normal family. Living with PH has made us stronger.

What message do you want to share with other kids who have PH?
Katie Grace: It is not the end of the world. There are others out there; we are not alone! All kids are limited in what they can do, so we are no different. I have three sisters and none of us is good at the same things, so don’t sweat what your friends can do that you can’t. Look at what you can do and get your strength from that. My mom says that I am never allowed to say, "I cannot do this or that," I have to at least try first.

What message do you want to share with other kids who have a sibling with PH?
Savanha: Treat them the same as you do anyone else in your family. I stick up for my sister when people do not understand when she gets tired. I play with my sister. I take care of her when she is feeling ill, and we fight and argue when she gets on my nerves. So some things do not change even if they have PH. I just have to be a little more supportive when she has doctor’s appointments. Even though she thinks I am bossy, I will always love her.

 

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

For the best viewing experience of this site, it is recommended that you use Internet Explorer 8 or 9 or Firefox.

© 2014 Pulmonary Hypertension Association. All Rights Reserved.

801 Roeder Road, Ste. 1000, Silver Spring, MD 20910   Patient-to-Patient Support Line: 1-800-748-7274
Webmaster@PHAssociation.org
    Privacy Policy   Virtual Tour of Website    Provide Feedback & Report Bugs

Designed by Matrix Group International, Inc.®

NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.