Disney Fantasy Stateroom 8588

Here is a quick report on stateroom 8588 on the Disney Fantasy. It is an accessible stateroom located on deck 8 mid-ship it is close to the elevators and very spacious! There is a full size bed, sofa bed, pull down berth and a murphy bed. The verandah is also a bit biger than normal(but not as huge as the aft staeroom we stayed in on the Wonder)

View from the door looking into the stateroom

Desk area was large with plenty of storage

 We had my son's Manual chair as well as a lightweight travel chair(for port adventures) with us. The manual chair is pediatric size but the travel chair is adult sized so this picture can give you some idea of the space.

We did not use this, but it is the murphy bed on the wall.

Nice big closets with large area in front. I forgot to get a picture of the inside, but the one closet had the pull down closet rod :)

I use a CPAP at night and so the plug  under the shelf next to the bed was great!

The bathroom is not separated since it is an accessible one. The pull down bench in the shower was sturdy and stayed up when not in use. Great layout and use of space.

The door to the stateroom is automatic. When you put your card on the sensor on the wall outside the stateroom, the door will open automatcally. From inside the stateroom there is a switch to push on the wall next to the bathroom door.

The air conditioner controls are next to the door as well as the energy saving key slot.

There are also 4 hooks on the wall next to the door. I found it very convenient  to hang our lanyards there :)

The verandah was a good size with 2 chairs and a side table. Definetely large enough to fit at least one wheelchair and several people :)

Embarkation day!

April 2, 2016

Super Lu here again! Today was embarkation day! The family was up early and had a quick breakfast at the hotel and headed to the port a little before 10:00 am. We caught sight of the Disney Fantasy and boy was she a sight to see! Because we have a modified van with a ramp we were allowed to park for free at the port. That saved quite a bit! Last cruise the family had trouble finding a spot to park, but this time an accessible spot had just opened up on the 3rd floor of the parking garage, right next to the bridge that led to the terminal. Great start for our adventure! The line had already begun to form so the crew headed to the back of the line. It was difficult to manuveur in the line as it was not wide enough at one point for Bobby's wheelchair to stay in line and go between the wall and the cars. We had both Bobby's manual chair and a travel wheelchair(it collapsed flat and that was the kind needed for the port adventure in Cozumel, but would not provide enough support for long term use) So with 3 large suitcases and 2 wheelchairs(the travel chair held all the carryon stuff) it was difficult to manuveur in line as the porters didn't get to us before they started moving the line over the bridge. A nice family ahead of us saw the difficulty and each one helped with an item. Proof again that there are good people left in this weary world :) The porter came after we had to wait a few minutes as others went onto the bridge, so we finally got to cross onto the bridge. Being so close to the Disney Fantasy was very exciting!

We only waited a few more minutes before being let into the terminal. Soon we were checking in and getting our lanyards and cards. We then headed to the kids club desk and the boys received their magic bands for the kids club. Bobby really wanted to look at the model of the ship, but by then that area was too crowded to get his wheelchair through. We opted instead to go out onto the observation deck and look at the real thing up close.

Soon we were able to board and the excitement continued to build as they took our embarkation picture.

How thrilling to hear them welcome the Baird family on board! We headed immediately to deck 4 to secure tickets for the Frozen and Princess meet and greets as well as the character breakfast then it was off to deck 11 and lunch at Cabanas.What a delicious start to our voyage!

After lunch we had a few minutes to kill before we could go to our stateroom so we visited the kids club to look around. The boys wanted a picture in the Monsters Inc room and the Toy Story room. There was so much to see and so much for the boys to look forward to doing!

We then headed to deck 8 and waited until it was finally 1:30 so we could check out our stateroom. It was in a great location being mid-ship and close to the elevators. There will be a separate report detailing this acessible stateroom for those who may be looking to check out what this category accessible stateroom looks like :)

Beth unpacked a bit and then we headed back out to deck 4 to be ready for the muster drill which began promptly at 4:00.

After the muster drill, it was up to deck 11 for the Sail Away show. The boys had a front row spot!

Instead of staying for the dance party after the show, the family headed back to their stateroom so they could stand on the verandah and wave at the people at Fishlips and the other restaurants and park at the port.

Soon it was time to change for dinner. Tonight's dinner was at Animator's palate. Crush swims around from screen to screen and interacts with some of the guests. This time he chose to speak to the one in the red floral shell(which was Beth) Such fun interacting with a famous sea turtle dude!

We had time before the show to see a couple of characters, so we visited with Minnie and Pluto!

After enjoying the Welcome Aboard show it was time for bed. Awaiting us in the stateroom was a stingray, tomorrow's Navigator and some chocolates! This week is going to be excellent! Tomorrow is our first day at sea! Here's hoping that neither David nor this reporter have trouble with the motion of the ocean!

Pre-Cruise Report

Super Lu here with my report on my latest adventure with the Baird family. We were without internet on this trip so this report is post cruise.

March 31, 2016
Pre- Cruise day-
The van was packed, Mickey dropped off at the pet resort, and we were ready to take off as soon as the boys got off the bus! We were headed south and hoping to make it to Gainesville Florida and have a short visit with Taylor before heading off to Port Canaveral on Friday.

The boys bus arrived right on time and the boys were so excited to start the journey. Traffic was light most of the way and so we did make it to Gainesville, Florida. Then we had a little problem. There was a race scheduled in Gainesville the next day and there were no hotel rooms available in Gainesville, Ocala or Wildwood! So the family only spent a few short minutes seeing Taylor before continuing the drive south. Finally a room was found in Orlando which made for a very late night!

A perk for driving so far and staying at the Best Western was getting some special waffles at breakfast. What a nice surprise!

Since we were already in Orlando, a jaunt over to the Character Warehouse was in order! This is the Disney Outlet store and a few items made their way to the van. Bobby modeled a Gaston's Tavern hat since Gaston is his sister's favorite!

Our journey continued on as we headed towards Port Canaveral. What a sight as we crested the bridge! There was the Disney Dream, sister ship to the Disney Fantasy. Sorry no photo because this reporter was too much in awe and Beth was driving. We checked in to the Country Inn and Suites and relaxed for a bit. We then headed to Fishlips so we could wave off the Disney Dream as she set sail. The boys enjoyed some Sprite and Beth had a delicious Key Lime Colada. Dinner ended up being yummy pretzel sticks with cheese dip and also some spinach dip with chips and bread. The highlight was being able to wave to the lucky cruisers on the Disney Dream as she sailed out of the port. We knew that tomorrow, others would be standing in this same spot waving at us!

 

 
We all headed to bed early as we were due at the port in the morning with a check in time of 10:30 am!

Dear FDA

Dear FDA,

While I know the impending winter storm precipitated your postponement of the Adcomm meeting scheduled for January 22nd, I implore you to reschedule it as soon as possible. So many families had already traveled to DC or were on their way prior to the meeting being postponed. These families and the rest of the Duchenne community know that our children do not have the time for further delays. Duchenne does not stop it’s progression to wait for postponements, delays or for that matter any reason. It is relentless in its continued deterioration of our children.

Today was a day full of reminders  that my son has limited time. Today was the 100^th day of school. He was to dress as what he would look like when he was 100 years old. While I realize not many of us actually make it to our 100^th birthday, those with Duchenne currently have zero chance of reaching that age. So in thinking again I realized that my sweet 9 year old son, statistically speaking, is considered middle aged when looking at the average life expectancy for those with Duchenne. So maybe his costume today wasn’t all that off. His 100, statistically speaking, would then be somewhere in his mid to late 20’s.

My family’s story is a bit different than most families dealing with Duchenne. I started out as a volunteer summer camp counselor for MDA in 1980 and continued through 2012. I met and lost so many campers/friends over those years. I saw what Duchenne does, but there was always hope as the research was ongoing. In 2012 I decided to adopt a child. I saw my son’s picture on my agency's website and saw his diagnosis and knew that he was my son. I could not let him face Duchenne alone. I knew he would most likely not receive any treatment in his birth country due to his orphan status and their lack of knowledge about neuromuscular diseases.

Eteplirsen will not help my son, but it will help others and it will help pave the way for exon skipping 53 that will help my son. I adopted my son in order to provide him a family to help support him through this disease and because I knew that medical care and research in the US was one of his best chances to have a better quality and longer life. Please don’t prove that wrong. Our community understands that it will most likely take a cocktail of drugs to ultimately provide a cure. Anything that can slow the progression and allow those with Duchenne to live longer and stronger will give them a better shot at being around for the cure.

Right now there isn’t a treatment available. For a child who produces no dystrophin to produce any amount of dystrophin is a big deal. There have not been safety issues or detrimental side effects. Please listen to those who have been going through the drug trials. Look at them and see the children that have been able to have access to Eteplirsen.

Just because I knew before adopting my son that he had Duchenne and all about the devestation of DMD does not mean that watching his progression doesn't break my heart daily. It also doesn't mean that I resigned myself to sit back and watch that happen. On the contrary, I got to skip the initial diagnosis shock stage and start instead in the fight for my son's life stage.

Our country is a great country and my son is now a proud American. Please allow my son a chance to grow old. Please don’t make his birth country regret adopting to an American family instead of a family from another country who may allow him access to drugs that will help slow or halt the progression of his Duchenne.

 I hold out hope that you will consider all the positives seen in the drug trials(no matter how small you may think they are, as to those of us fighting the fight against the villianous Duchenne, small victories are huge!) I count on you to do the right thing and allow Eteplirsen accelerated approval. I count on you to not take away our hope.

                                                                           Sincerely,

                                                                              Beth Baird

                                                                              Mom to Bobby Baird age 9