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)

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 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!)

Leanna reflects on Day 1

These two days in DC have been some of the best days of my summer. The amount of history in this city is truly breathtaking. Most of today was spent getting ready to meet our government officials (but we did have a great tour of DC including the Natural History Museum.) My family and I were asked to do a role play during our lunch meeting to practice what to do during the real meetings tomorrow. I was a bit nervous for that, but everything went spectacularly and I feel that I am prepared for what is to come tomorrow. I hope that I can tour more museums after the meetings, as I want to see as much as I possibly can before I have to return home. Washington DC is an amazing place and I am so glad that I have this opportunity to not only help advocate for Boston Children’s Hospital but for all kids.

~ Leanna

Day #1 of Family Advocacy Day 2012

It’s Day #1 at Family Advocacy Day and we are having a blast. This morning we had a nice breakfast and were off on our sightseeing tour. We drove by the White House, The National World War II Memorial and the Washington Monument on our way. Our first stop was the Lincoln Memorial where we got off the buses to walk around and take photos. We climbed the stairs and had a great view of the National Mall. Unfortunately, the Reelecting Pool is still under construction so it wasn’t exactly reflecting, but it was still a great view.

Next we walked over to the Vietnam War Memorial, which was stunning and really had an impact on us. It is something everyone should see at least once.

We got back on the buses and headed over to the National Museum of Natural History where we saw fossils of huge dinosaurs, skeletons of giant fish and mummies. We even got to see the Hope Diamond!

After that it was time to go back to the hotel for lunch and an afternoon briefing for all the families to understand what we are going to advocate for tomorrow on Capitol Hill.

Now it’s break time before the big party tonight! Stay tuned to hear about all the fun.

The Aboujaoude family arrives in DC

It was an amazing flight in from NH! Climbing and descending through the clouds was a cool experience for Nicholas. We are so excited to represent Boston Children’s Hospital on Capital Hill. Nicholas has received the best care there, and it is rewarding to be able to support them as they have been so supportive to us.

We flew in early, so we were one of the first to stop at the registration desk. We met some great people from the Children’s Hospital Association. They were so friendly and helpful. After we registered, we headed over to the International Spy Museum (per Nicholas’s request) and learned how to become spies. Being a spy is Nicholas’ favorite thing to do.

We are really looking forward to meeting the other families and having fun.

~ Mickayla Aboujaoude (Nicholas’s sister)

Let’s hear from Leanna

Hi, My name is Leanna and I cannot believe in less than two weeks, I will be in Washington, DC speaking with Massachusetts Senators John Kerry and Scott Brown, along with Representatives William Keating and Stephen Lynch.

It will be such an honor to meet with members of the Government and speak with them about such an important issue as the funding for Children’s Hospital Graduate Medical Education program so that training of pediatric doctors can continue. This funding is essential to children all over the country.

I will be representing Boston Children’s Hospital, where I was an inpatient in 2010. I will be joining patients from across the country at Family Advocacy Day and I will be able to tell the Senators and Representatives, first hand, about my rare tumor and how the staff at Boston Children’s Hospital saved my life. My recovery was due in large part to the excellent training my doctors have received due to the Children’s Hospital Graduate Medical Education program.

I can’t wait to go to DC and meet everyone.

~ Leanna