Cammy Can Reverse Rett: Thank you Hyatt Regency Cambridge

This is a long overdue THANK YOU to the amazing Hyatt family.

Our daughter has a rare neurological disorder called Rett syndrome. It affects just about everything. Rett has robbed her of the abilities to walk, talk and use her hands. But she understands everything, she is very smart. She communicates with her eyes. She is almost 6 and has yet to walk independently or utter a word. She is wheelchair bound and depends on us for everything from feeding, drinking, changing, sitting on the potty, wiping away an eyelash, and everything in between.

Last summer, Cammy began the IGF-1 clinical trial in Boston. We knew this was going to be a big emotional, physical, financial stress on our family, but we are determined to give our daughter the best future possible. Over a year and a half, we would travel from Wheaton, IL to Boston 6 times for a total of 60 days. Leaving our home and comforts for so long for tests, appointments and injections was daunting.

We gained a new family and a home away from home when we began our travels. The Hyatt Cambridge has gone above and beyond to make sure we felt at home. They have made us feel like family and have treated Cammy like a princess.

Ivan was the first one we met as he checked us in. He made certain we had all the accommodations in our room we needed for that first long 12 day stay. Throughout each stay, Cammy has had desserts sent up to her compliments of the staff. Ivan has gone out of his way to make sure we knew where were were going each day. Each trip, he is eager to hear from us a few days early to make sure he has our room set up.

We next met Maria at breakfast and she immediately recognized we would need some extra assistance. She let us into the restaurant before it opened to let Cammy watch her Sesame Street at a table and give me a much needed cup of coffee at 6am.

While the breakfast staff was getting the buffet all set up, Ricky came over and introduced himself. I think Cammy fell in love with his big smile and gentle teddy bear approach. He was soon making Cammy special Mickey Mouse pancakes and fruit smoothies each morning. He has sent Cammy up desserts every time we visit to make her feel special (and to help her gain some weight). Our 4 year old, Ryan, asks when we are going to back Boston to see Ricky all the time.

Andres charmed his way into Cammy's heart very quickly. He calls her "princess" every time he sees her. He is ready with her milk and juice before we are even at our table. He asks about my sister and twin nieces who came with on the very first visit. He remembers everything. He's shared about his family and we are so grateful for that.

On the second trip we met Al. Ricky thinks he's trying to steal his thunder :) Cammy lights up with she sees Al's big smile. He's eager to get Cammy's breakfast perfect each time and make sure it has fruit for good nutrition. Billy likes to talk food with Al. We're going to bring him from Chicago beef with giardiniera on our next trip since they've never had it. Whether it's because Al's wife is a special needs teacher or because it comes so naturally, he is absolutely amazing with Cammy.

Each day, we seem to see Kerolyn taking on a different role. One day she'll check us in, the next she's driving the shuttle. She always has a smile on her face. She always wants to know where we are headed or if we need any help. When we asked about the bus and sub system, she gave us her Charlie card with money on it and showed us how to navigate the city.

Roger loves to give Cammy high 5s. He's always so sweet when we see him. He's ready with her milk as we sit down.

During our extended 10 day stays, we obviously need to do laundry. The laundromat is a mile away. As I was ready to take a cab there, Lena was off-duty, waiting for her ride. She asked where I was going and gave me a ride there and back. She didn't have to do this on her off time. But she did so out of the kindness of her big heart.

Arturo captured our hearts this last visit. The first night of our most recent stay, he delivered some "welcome back" goodies. He smiled and told us that he had a sister with the same condition. I assumed he just meant that he had a sister in a wheelchair. He kept smiling at Cammy with tears in her eyes saying how Cammy's mannerisms were exactly like his sister's. He said Cammy was bringing back such memories of his sister. His sister did have Rett syndrome too! They were a very large family from Italy. It melted my heart to hear Arturo share about his family, about his mother caring for his sister who passes away at 46. Living with Rett until 46 gave me such hope. Arturo visited us a couple more times throughout our stay, providing us with great inspiration.

Pat made it his mission to get us to our appointments on time and put Cammy to sleep on the way. Cammy does not sleep well to begin with, but in a hotel, it's even worse. However, each time we were in Pat's shuttle, Cammy would immediately fall asleep.

Last but certainly not least, Kelly, we cannot thank you for all that you have done for us to make this possible. Our visits have truly felt like a home away from home.

There are so many more members of the Hyatt Cambridge staff who have made us feel comfortable. Over our winter visit, the front desk had a mini Christmas tree and decorations set up in our room to make us feel like home right before Christmas. Each and every member treated us like family and treated Cammy like a princess. This is the only place we will stay in Boston.

I think the most important thing I have been impressed with is that each and every staff member knew exactly how to speak with Cammy when they met her. This is not something that is innate to people. It is rare to see a nonverbal little girl in a wheelchair unable to use her hands to communicate. Each and every one of them, squatted down to her eye level and spoke to her like any other child. They looked into her eyes for her response. They just knew.

Thank you Hyatt Cambridge, from the bottom of our hearts.

To learn more about Cammy and life with Rett syndrome: