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)

An extra day in DC

Our final day in D.C. was quite busy. We had a private meeting with Senator Shaheen, per her request. As I expected, the meeting went really well. Senator Shaheen is a big supporter of legislation that makes healthcare more accessible. She is also a huge supporter of Boston Children’s and knows they must continue to train amazing specialists. During our meeting, Senator Shaheen was extremely supportive and showed genuine interest in our personal story.

After a lengthy visit with the Senator, we received an escorted tour of the Capitol Building with Molly, an intern at Senator Shaheen’s office.  Unfortunately, due to the fact that we had a flight to catch, we had to shorten our tour of the Capitol.

Overall, our trip to D.C. was very successful. We all felt good about the meetings we had. It was so wonderful to be able to connect with our Senators and Congressman to tell them in person how important Boston Children’s Hospital is to Nicholas and our family. They were all interested in our personal story and seemed to really pay attention to what we said. We were so honored to be chosen by Boston Children’s and would like to thank them again for the opportunity to tell our story and represent them on Capitol Hill.

~ Lynne (Nicholas’s mom)

Proud of our FAD families

Our FAD12 group

I am so proud of each one of our families!

Together, we participated in 15 meetings on Capitol Hill during Family Advocacy Day.  We spoke with many staff members and had personal meetings with Senator Scott Brown (MA), Representative Bill Keating (MA), Senator Jeanne Shaheen (NH), Senator Kelly Ayotte (NH), Representative Charlie Bass (NH), Senator Bernie Sanders (VT) and Senator Patrick Leahy (VT).  Our patients and their families had the full attention of everyone they met and they did a fabulous job telling their personal stories and drawing connections from their own experiences to issues of public policy.  As Leanna, Kyler and Nicholas have all relied on numerous pediatric specialists and sub-specialists for their health care, they put some personal faces on the need to support institutions that train these types of health care providers.  There is nothing like a real life example from one’s own district to advance the education of a Member of Congress or a staffer.

Some of the highlights of my time on Capitol Hill with families this year included:

  • Leanna’s composure in every meeting.  Especially in her meeting with Scott Brown, there were a lot of cameras and distractions, but she kept her focus and articulated her story beautifully
  • During the Ayotte meeting, Nicholas decided his mom’s description of his health history had gone on long enough and interrupted her with this summary:  “I’ve got issues.”
  • A ride on the Senate subway!  What a great way to beat the heat.  We were lucky that several offices offered us staff escorts to travel from one side of the Capitol to the other using this staff-only system.
  • Kyler, when asked to tell Senator Leahy about himself, talking about his school, his hobbies and his favorite food, which is shepherd’s pie.
  • Nicholas’s sister, Kyra, quietly saying to Jeanne Shaheen after the meeting “I don’t know how the health care system works, but I do know that without Boston Children’s Hospital, my brother wouldn’t be here.”

All of our families have returned to New England and have been welcomed home by cooler weather.  I hope all of our families and Dr. Berry leave DC knowing that they have made a difference.  My job as a lobbyist on Capitol Hill is try to educate those making decisions about our health care system.  But I know that it is our families are the real experts and I am so thrilled to have had the opportunity to bring these experts to policy makers.  I know that they will remember our families and their stories when it is time to make tough decisions.

~ Amy DeLong (Manager of Federal Government Relations at Boston Children’s)

Leanna’s day on the Hill

Tuesday was an absolutely phenomenal day. It was unfortunate that Senator Kerry and Congressman Lynch were unable to make our meetings, but meeting with their staff was great.  We did meet with Senator Brown and Congressman Keating and that was a remarkable experience!

Although I was a bit nervous in the morning, I quickly relaxed and enjoyed the day. It was fascinating to participate in these meetings and play such a large role. The amount I learned in these few days will truly make an impact on my future. The opportunity to interact with all of these different jobs has helped open my eyes to so many possibilities. I am so grateful to be able to participate in Family Advocacy Day and I hope I can return to DC someday!

~ Leanna

The Aboujaoudes recap their day

Yesterday the Aboujaoude family had an amazing day of meetings. Here are their thoughts:

  • We met with Senator Jean Shaheen’s policy advisor Alison MacDonald this morning. It was an enlightening meeting. All of the staff were exceptionally friendly and helpful. It was really great to be able to tell our story and be heard. Nicholas was so excited to give his baseball card to Alison. We are looking forward to our meeting with senator Ayotte.
  • We were walking to lunch when we were fortunate enough to actually meet senator Ayotte herself in the hallway. She was enthusiastic and eager to talk with us. We were just like true lobbyists having a quick meeting in the corridor.
  • Well, we had our final meeting with Congressman Bass. He was a good listener and was very supportive as well. He was interested in hearing Nicholas’s story and was eager to reassure us of his support. It has been a long and hot day. But we really enjoyed having the opportunity to meet and discuss our most pressing concerns with our Senators and Congressman. Tomorrow we will wrap up our Capital Hill and DC visit by attending the weekly breakfast that Senator Shaheen offers for her NH constituants. We are looking forward to that.

Stay tuned for more from Nicholas and his family!

Day 1: Nicholas’s family reflects

Today was an awesome day. It started with a good breakfast where we got to meet other Children’s Hospital families from around the nation. We then had a wonderful tour of the city. The Lincoln Memorial was a Magnificat monument. It was a bit too warm but definitely worth it! We went from there to the  Vietnam War Memorial. It was very overwhelming to see all the names of those who died for freedom.

For Nicholas, the high lite of the tour was the Museum of Natural History. He enjoyed seeing the dinosaur exhibit as well as the giant elephant. However, I secretly think he may have enjoyed holding the extra large caterpillar the best. I was even brave enough (if only for a couple seconds) to hold a Madagascar Cockroach! Yuck!

After a morning of touring we had a great lunch that ended with a very informative briefing on how a bill goes from an idea to a potential law.

After a much  needed break we ended the day with an indoor BBQ. We stuffed ourselves while we were entertained by a magician, a yo-yo performer, face painters, caricature artists, and an amazing live performance by a band named Scythian! And last but not least, the children were showered with gifts by the Children’s Hospital Association. Needless to say, that after dancing the night away Nicholas and his sisters were all happy, tired, and ready to call it a day. Thank you Children’s for such a wonderful and memorable day!

Day 2 begins

It’s early and we are getting ready for our big day. In just over an hour we will be headed to the Hill to meet with senators and representatives for Massachusetts, New Hampshire and Vermont with our families.

Keep checking back to see more photos and read updates from Leanna, Kyler and Nicholas (and their families!)