Reflecting on Family Advocacy Day ’10

Attending Family Advocacy Day for Boston Children’s Hospital was life-altering for our entire family.

Zeb has been able to realize that though his health issues may be scary, he has the ability to use his voice and share his experience so he can impact the lives of other children who need the incredible medical services that Boston Children’s provides.

As a family, we feel empowered.  We, as Zeb’s parents, can help children, too, and offer our voices to share the needs of children; the needs of children’s hospitals.

We will be forever grateful for this opportunity and look forward to volunteering our advocacy skills however we can for our beloved Boston Children’s Hospital.

Thank you so much.

— Kara (Zeb’s mom)

Our All-Star families in the media!

Today’s MetroWest Daily News features an article about John and his family, and their participation in Family Advocacy Day.

The Brattleboro Reformer also highlights Zeb and his family’s trip to DC in support of children’s hospitals.

Thank you for being our champions!

Thank you from John

John and his family at Family Advocacy Day

We had a great time in Washington D.C. and want to thank you again for the opportunity to show our support for Children’s Hospital. It was a pleasure to meet and work with you and Amy, you’re both very dedicated and passionate about Children’s Hospital and you could see it in your work.  They are fortunate to have wonderful individuals like yourselves representing them.

Celebrating our DC experience

Dr. Rosen poses for a picture with Senator Leahy, Zeb and his parents, and Amy DeLong

Meeting with the staffers, Representatives and Senators gave me real insight into how government works and a much greater appreciation of just how fortunate we are to live in a country and an era such as ours.

In much of the world, and throughout most of human history, rulers were people best avoided who mostly abused their subjects without any consideration for their needs or well being.

In contrast, all of those we met with yesterday listened intently to what we had to say, asked questions which demonstrated a clear grasp of the issues and a desire to understand exactly what the problems were so that they could help bring about improvements in those areas (funding for training programs in pediatric subspecialties to address the growing shortages, reducing what drug companies can charge for certain medications, and continuing funding for Medicaid, which insures 30% of our hospital’s patients).

The simple fact that ordinary citizens such as ourselves were able to walk into the offices of some of the most powerful people in the land, talk about matters that are important to us, and be listened to is something to be celebrated and cherished.

— Dennis Rosen, MD

Raising our voices in Washington

Families, providers and staff who advocated on behalf of Children's Hospital

I am so proud of the families and providers who spent the day on Capitol Hill today. They were tireless advocates for children and children’s hospitals!

We met with 2 Congressmen, 3 Senators and many congressional staff. Along the way, we also met one kitten and one dog – both in Senators’ offices.

John, age 13,  impressed everyone with his ability to tell the story of his experience at Children’s Hospital Boston and did an excellent job explaining to Representative McGovern, Senator Brown and staff in Senator Kerry’s office just how important the hospital is to him.

Zebediah charmed Representative Welch and Senators Sanders and Leahy.

We are so lucky to have patients and families willing to travel far and wide to advocate for children.

— Amy DeLong

Summing up Family Advocacy Day

What do I think about this experience? Family Advocacy Day was great!

A lasting impression

Our trip to Washington DC with Boston Children’s has been amazing. To be asked to share Zeb’s story with those on Capitol Hill is one of our most memorable family trips. Senator Leahy, Senator Sanders, and Representative Welch care about children and their health concerns. I felt listened to by them and their staff. I’m forever grateful to Boston Children’s for this opportunity – it has helped Zeb see the impact he can have on other children’s lives, using his voice and compassion for others.

— Kara (Zeb’s mom)