2010 Award Winner Profile

Kathy Groebner

By Kathy Groebner
Mom to PH Patient Katie Grace

Lantos Grant Brings Joy to Mom and Children

PHurry PHriend 
On February 13, 2008, my baby girl Katie Grace was diagnosed with pulmonary hypertension. Like any family that has received this diagnosis, ours went into a tailspin of “what, why, where, and how.” Because we had never heard of pulmonary hypertension, and the news we received sounded so grim, we started to look for others who had been down this road. It was hard to find other families who knew what we were going through, but when we got to Stanford our doctor set us up with another family whose daughter had PH. That family brought Katie Grace a gift: a backpack shaped like a bear, even though it was before she started on IV treatment and needed the pack. After she started on IV medication, they also gave us a bag to carry her pump in, but it was black canvas and not practical for children.

So began the search for a bag that would make it easy for a five-year-old to play and look like other children.

As luck would have it, one of my neighbors met a retired school teacher named Mary who made school bags and purses. After Mary heard about Katie Grace’s pump, she couldn’t wait to meet us and make a bag for her. Once we met, we knew it was going to be more than “just a bag.” Katie Grace brought Mary the “Build-A-Bear” bear she had made and we found a bear-sized backpack. One thing led to another, and soon we had the idea of making a pump for the bear. At that point, Mary and I agreed instantly that all PH kids should have one.

Mary and I were paying for all of the materials ourselves, but she’s retired and we’re a family of four with one income, and this was hard on both of our budgets. So just like the good luck I had in meeting Mary, an issue of Pathlight arrived which included an article about the opportunity to apply for a Tom Lantos Innovation in Community Service Award. Although I had never applied for a grant before, my friends all encouraged me to do so and I did.

When I learned that I was awarded a grant, we got to work right away. Our first thought was to make as many as we could before PHA’s 2010 International PH Conference in California. It was so wonderful to be able to hand a “PHurry Phriend” to the kids at Conference and to send out more afterward. I love hearing stories of how the kids take them to all their doctors’ appointments, and I learned that one girl even named hers “Katie Grace.”

A PHurry PHriend is more than just a bear with a backpack. Each bear has IV cords and a pump … just like our kids. This gives the child comfort and a way to tell others about their disease and the pump without embarrassment. We send a letter from our family to each family that receives a PHurry PHriend, providing them with information and offering the hope and encouragement that life will go on even with PH. We have already sent out more than 60 PHurry PHriends. It has been a joy.

Life as a caregiver can be hectic and there are times I find myself running a little late in producing our PHurry PHriends, but if your child needs one, please send your name and address to me at groebs4@live.com and we will send you your free PHurry PHriend thanks to PHA and Gilead’s sponsorship of the Lantos grants program.

 

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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.