Leanna’s mom looks back

Who would  have thought our daughter would be going to Washington DC with Boston Children’s Hospital  for Family Advocacy Day!

Two and a half years ago we didn’t know what was wrong with her or if she would even live, we just knew that she was very sick.

If not for the expert doctors and staff at Boston Children’s, Leanna’s rare condition could have been fatal.

During Family Advocacy Day Leanna was able to  meet with Senator Brown and Congressman Keating. We also met with staff from Senator Kerry and Congressman Lynch’s offices to tell the story of her illness (pheochromocytoma-a very rare endocrine tumor) and how important CHGME is to our family.

CHGME is so important because that’s how pediatric training is available to doctors. Without this program, who knows what could have happened to Leanna.

We had lots of work to do and lots of fun too!

We arrived early Sunday morning and were able to do some sightseeing and walk around DC.

Monday, bright and early we had a group breakfast and a bus tour (thankfully air conditioned) around the Capitol.

One of the great highlights of the tour was seeing many monuments and the Natural History Museum.

Seeing dinosaur skeletons and various animal species was great as well as seeing crowns and jewelry worn by queens and famous people. The entire Gem room was something special.

Some of the kids held caterpillars and cockroaches, they clearly were much braver than a lot of the adults.

After returning from the tour, we all gathered for lunch and a meeting where we brushed up on civics and how a bill becomes a law.

We had the most wonderful speaker – Katie Beckett’s Mom. Katie and her Mom fought hard for Katie to be allowed to get treatment at home and not have to live her entire life in a hospital or nursing home. They fought to create a law today that enables families to have home health care.  Katie sadly passed on only 2 months ago, but her brave Mom still came to talk to us about the importance of advocating and talking to members of government.

She told the kids and parents it is their turn now to carry on in Katie’s footsteps. There wasn’t a dry eye in the place after hearing Mrs. Beckett speak.

Out of great sorrow and difficulty may bring many wonderful things.

For dinner there was a great party where all of the patients and families had a great time getting to know one another. The children that were there were so inspirational! There was a magician, face painting, caricature artists, games, dancing and other fun activities.

My husband and I made note that all the kids were so polite and kind,  no arguing or complaining, just smiling happy faces!

Even after a long day, I think most everyone could have partied late into the night, but we all wanted to be rested for the big day on Tuesday–Visiting the Hill.

It was really great meeting people from all over the country.

In the morning everyone gathered for breakfast and split up into groups to visit their state Senators and Congressmen.

There were many meetings and we are very proud of how Leanna articulated her story of her medical experience to many people and told them without CHGME funding she may not be here today. She not only told her story but stated that she also was representing so many other children that are not able to advocate for themselves.

Leanna also told the Senator, Congressmen and staff members how very important well trained pediatricians and pediatric specialists are.

I think it is good for our voted representatives to see that a bill on a desk is not a piece of paper but represents real people.

Leanna  was so honored to be asked to represent Boston Children’s Hospital.

We are so fortunate to have such a great facility with great doctors and staff, so close to our home. In other parts of the country people are not so lucky.

We are forever grateful to Boston  Children’s for saving our daughters life.

Please contact your local Senators and Congressmen to ask them to support the Children’s Hospital Graduate Medical Education program so that life saving care can continue for children.
~ Terri (Leanna’s mom)

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