Family represents Children’s in D.C., meets with lawmakers

Last week, Heather and Tim Gillen and their two children, Ally (12) and Nate (10), traveled to Washington, D.C., to meet with elected officials and to advocate on behalf of issues that are critical to children’s health.

The Gillens traveled as representatives of Children’s Hospitals and Clinics of Minnesota. Ally has been undergoing treatment at Children’s for Dermatomyositis, a rare and life-threatening auto-immune disease.

While in D.C., the Gillens met with members of Minnesota’s Congressional Delegation and asked them to protect two programs that are critical for children:

  1. Medicaid – The single largest payer of children’s health care in the country, covering more than one in three children
  2. Children’s Hospitals Graduate Medical Education Program (CHGME) – A program that is critical for providing support and training for pediatric specialists

The Gillens spent three days in the nation’s capital, and they sent back the following account of their journey:

July 23rd, 2011

We are here! The Gillens have arrived in Washington, D.C.! We are so excited to be here to represent Children’s Hospitals and Clinics of MN at NACHRI Family Advocacy Days.

July 24th, 2011

The morning started off with a visit to the Smithsonian Museum of Natural History. The building itself is breathtaking and the exhibits were amazing. Ally especially enjoyed the Egyptian mummy exhibit as she studied Egyptian history last year in school. Nate loved the mammals exhibit.

In the afternoon we attended the IMAX show, “Born to be Wild.” The show was about two extraordinary women who have devoted their lives to helping animals. One saved baby orangutans in Borneo and the other saved baby elephants in Kenya, all with the goal of restoring their health and returning them to the wild. As I watched the show I with struck with the thought that this is the reason we are here in DC. We are advocating for children so someday they too can grow up to be healthy and successful.

I have decided D.C. is a good place to be if you have Dermatomyositis like Ally does. She can stay out of the sun and in these cool marble buildings without worry.

Tomorrow we begin our NACH journey. We are excited to share our story and help make a difference for all kids.

July 25th, 2011

This morning began with our radio interview. Ally and I spoke with WYRQ-FM in Little Falls MN. We shared that we were in D.C. to represent Children’s and to put a face to critical issues, especially surrounding Medicaid and the Children’s Hospitals Graduate Medical Education Program.

We had a wonderful lunch with the other families. It was the first time we were all together and meeting other families from around the U.S. was amazing. Ally got to share her own personal NACHRI trading card with the other children in attendance. They had such fun trading cards and getting to know each other better.

In the afternoon we had a family briefing session about the legislative meetings the next day. After the meeting we had a special surprise guest – Miranda Cosgrove from the Nickelodeon Show “iCarly” came to sign autographs and have pictures taken with all the kids – so fun and exciting! The kids LOVED meeting a celebrity.

Afterwards we headed out for a tour of the Capital with special tickets from Rep. Paulson’s office. It was great to hear about all the behind-the-scenes facts about the Capitol building. It is a huge place and I do not know how you would not get lost there. I suppose it is kind of like the hospital and sooner or later you just figure it out.

Our evening concluded with a wonderful party sponsored by NACHRI for all the families. NACHRI sure knows how to make each and every one of these kids feel welcomed and special (siblings included). For Tim and I, it was nice to be able to talk with other families who have also experienced health care crises with their children. You often feel so alone, no one really understands, but in that room everyone in their own way completely understood.

Tomorrow is our big day! We hope that we can make a difference with our story the way families have for years before us. I keep thinking about the fact that 3 years ago, as we were experiencing our own life turning upside down, another family was in DC sharing their story and making a difference for us.

July 26th, 2011

Our morning started out bright and early with a great send-off breakfast. Everyone looked so great all dressed up and ready for their legislative visits.

We had a very full day of meetings including:

•  Senator Klobuchar – This was our first meeting and the first time telling our story on Capitol Hill. Ally was a little shy and mom was a little teary eyed (I know, I am sure those of you who know me can’t believe I cried. I am just hoping the day will get easier each time we re-live the story). Good thing Dad was there to take over and help fill in the pieces. Senator Klobuchar invited us into her office and even had a Target Field book on her coffee table that she talked to the boys about (Nate keyed in on that right away).

Representative Paulsen – We meet in Rep. Paulsen’s office and Ally again shared her story. The part of the story that Ally loves telling the most is about the therapy dogs and how they made such a difference for her. Ally brought along a scrapbook of her time in the hospital and the therapy dogs and Rep. Paulsen was especially interested to see what she had created. He asked questions and looked at all of her pictures.

Representative McCollum – We meet with her Legislative Assistant and were briefly able to see Rep. McCollum before she left for another meeting. She was gracious and offered that if we needed anything while we were in DC to just let them know.

Representative Walz – Who found a last minute break in his schedule to meet with us in person.

Senator Franken – This was our last meeting of the day. For those of you who do not know, Senator Franken has his own office dog whose name is Blaine. He and Ally had an immediate connection. They both believe in the healing powers of our furry friends.

We also met with staff representing:

Rep. Bachmann

Rep. Peterson (whose office is full of animals including a huge elk on his office wall! He also had a framed picture on his wall that a child at Children’s had painted)

Rep. Kline

Rep. Ellison

Rep. Cravaack

As our day came to a close, we were hopeful for the difference that our story and the stories of 39 other families doing this same thing on this same day in Washington DC might make as these lawmakers move forward with the tough choices regarding budget cuts.

We continue to hold tight to the fact that this happened to Ally for a reason and all of this is part of that plan.

Good night from D.C!

The Gillens

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