Nathaniel’s Wish Trip *NYC Disney Newsies* PTR 10/8/12

[mom2ajnm]

Hi Everyone!! I thought it would be fun to make a Pre Trip Report for my sons NYC wish!! We have never been to NYC so we need all the help we can get!!

Nathaniel’s Wish:

We sent in Nathaniel’s wish paper work to the AZ Chapter of the Dream Factory May 2011. We didn’t hear from them for months and months so I just thought he was not approved. In February 2012 Nathaniel was having a really hard time so I thought I would just email the Dream Factory! They called me the next week saying Nathaniel is going to be the first kid in 2012 from the AZ Chapter to have his Wish granted!! When we first sent in his paper work his dream was WDW but since it was 8 months later they asked if his wish has changed. Being 11 yrs old it was really hard to pick his wish. Then he found out the Disney play Newsies was on Broadway, he new exactly what he wanted his wish to be. I called the Dream Factory and told them his wish!! A few weeks later they called and told us that his Wish to go to NYC to see the Newsies was Granted!!!

Here is a picture of Nathaniel finding out that his wish was granted.

A few weeks ago Dream Factory came to our house to meet our family and ask him tons of questions. We picked out our dates, he gave a list of all the things he wants to do while in NYC, and what shows he wants to see. They gave us a list of hotels to pick from!! We now have our hotel and flight booked!! We will be going Oct. 8-15th!! This is our first big family vacation since Nathaniel being diagnosed. I’m pretty worried about it all. The subway and taxi scare me.

 

[mom2ajnm]

About Nathaniel:

Nathaniel is 11 yrs old and just started the 6th grade. Nathaniel loves to read, write, draw, hang out with his friends and be on stage. He has a heart of Gold and is always trying to make someone else happy. He started acting when he was 7, right before he was diagnosed. Over the years he has found that being in a show makes him forget about the pain.

Medical: Sorry so long

Nathaniel suffers from a chronic illness called Eosinophilic Esophagitis (EoE), asthma, abnormal loss of weight, neuropathy and esophageal reflux. Eosinophilic Esophagitis (EoE) is an allergic inflammatory disease characterized by elevated eosinophils in the esophagus. Eosinophilic Esophagitis is a rare disease, but increasing in prevalence to an estimated 1: 2000. Pretty much means his body thinks food, medicine, allergens are a poison so it attacks his esophagus. He has 4 foods he can eat and is feed through his g-tube.

Nathaniel Medical Story:

Nathaniel has been sick all his life, but in Oct. 2008 he became very ill. He would get stomach aches that would last 6-8 hours straight. He would literally scream on the top of his lungs the entire time. After 8 long months of blood draws, x-rays, ct scans, Dr.‘s appt., ER visits we finally found a GI that would listen to us. In June of 2009 Nathaniel had his first endoscopy and the Dr. came out to tell me that Nathaniel had EoE and it was very bad. We felt relieved after finally getting a diagnoses; only to find out there is currently no cure for these disorders. In fact, there are not even effective or consistent treatments or medications to treat the symptoms. We thought over the years he would finally feel better. Little did we know, that he would not feel better but worse.

Our plan was to start from starch and add a few foods and then rescope him every few months to see how his body was reacting to those foods. February 2010 he had a routine endoscopy and he woke up paralyzed for 12 hours. Nathaniel had the Dr.s baffled of why this was happening. He spent the next 3 months using a wheelchair and trying to get his muscles in his legs to work again. We found out that he now has eosinophils in is blood and tissue. During our stay in May 2010 we could not touch any part of Nathaniel’s body. He had such a bad reaction to one of the medications he had amnesia for several days and he passed out 50+ times within hours. It was seriously the scariest days of my life. Our Dr.'s are still not sure what happened to him.

Summer 2010 Nathaniel starting losing weight and we were unable to add any foods. In Oct. we had to have a NG tube placed for him to get special amino acid formula into him. We came to the hard conclusion that Nathaniel is not really going to get better so we had a g-tube place on March 7th 2011. At the same time he had a scope to see how things were looking, due to his reaction the last yr we had to stop doing routine scopes. Thank God he had NO reaction but we found out that his eosinophils count is extremely high again. We had to break the news again to him that he is losing more food. Unfortunately Nathaniel spends many days crying in pain, and his stomach hurts 100% of the time.

He had a scope in March and August and both showed very active disease. This is extremely hard on him since he is only eating rice, potato, pizza sauce and pepperoni. That’s it, only those 4 foods and we can not get a clean scope. We really don’t know what to do now. He gets his main nutrition from Elecare via his g-tube.

Nathaniel has tried very hard not to let his chronic illness define who he is. A Few years ago he wrote a book about a super hero finding out that he had EoE. He wanted to let other children with EoE know that they are not alone. We had no clue the support we would have with this book. We have sold over 350 copies around the world, including UK, Australia, Canada, Mexico and New Zealand. We have received tons of emails thanking Nathaniel for helping their children.

You don’t realize how much our society revolves around food until you have a child that can only eat a few foods. Just driving down the street or watching TV you are reminded of what you cant have. He has been sent to the hall at school while the other children celebrate with cupcakes. He hasn’t been able to have a real b-day cake, go out to eat, have Christmas breakfast with the family, or sit down and eat thanksgiving turkey. Nathaniel is a 1st degree black belt and state champion, but due to his EoE he had to quite. His poor life has been put on hold and now its all about getting through the day without pain, tube problems and trying to have enough energy to make it to school. This illness has infected him physically and emotionally.

Nathaniel right before his last scope, he loves telling all the Dr.s jokes while he is falling asleep!!

Sister:

Nathaniel’s big sister, Alexis, has been a huge supporter. She has spent many days next to his bed in the hospital, helping with feeds, going to Dr. appointments, trying to get his mind of his pain and trying to be creative with making food dishes out of his safe foods. Alexis is 14 years old and just started her freshman year in high school. This will be the first year they are not at the same school.

Alexis had everyone at school sign a big get well card for him after he got his g-tube placed.

Me:
I’m a single mom and try my hardest to me super mom!! I have huge support from my mom. She will be able to join us on our trip since they like 2 adults to go!!

 

[Lilfoot93]

So glad Nathaniel got his wish What an amazing young man he is! He truly deserves this wish as well as your family! That is great that he wrote a book too.

I have been to NY once and the subway system was incredible! We never did take a taxi though!

Can't wait to hear more about Nathaniel and his wish!

Jackie

 

[carebearkidney]

So thrilled you started your PTR! Poor guy has been through so much! Can't wait to read all about the planning and the trip. I've never been to NYC - so I'll have to "live" through your posts.

 

[Sorcerer Jody]

The "NYC" part of your trip report caught my eye! I went to NYC a couple of years ago (in October, and it was sunny, t-shirt weather!) and it was one of my favourite places I've ever been! I love Disney, so in the five days that I was there, I saw all three of the Disney shows that were on at that time - Lion King, Little Mermaid and Mary Poppins. The Lion King musical is absolutely my favourite show ever - so beautiful it makes me cry - I've actually seen it six times in five different cities! I'm sure I would love Newsies, too. There is a really, really great Disney Store in New York, close to Central Park I think. And this probably wouldn't be a highlight for an 11 year old boy, but for me I was so looking forward to seeing the real Christopher Robin's original stuffed animals - Pooh, Eeyore, Tigger and everyone else - at the New York Library where they are kept in a special room. Unfortunately, the room was under renovation during the time I was there - so if I went back, that would be at the top of my list! Other than Disney things, I also enjoyed Central Park (so much more beautiful than I had imagined), Statue of Liberty, Empire State Building, FAO Swartz, Brooklyn Bridge, and just walking around taking everything in. It's an amazing city, yummy food - I hope you and your family have the time of your life! Your son sounds like a wonderful, brave boy, and deserves so much to have a special trip.

 

[xanphylus]

I love his wish!!! That is a great and unique wish I haven't seen before! Hope you all have a great time and keep us posted!

 

[mom2ajnm]

So glad Nathaniel got his wish What an amazing young man he is! He truly deserves this wish as well as your family! That is great that he wrote a book too.

I have been to NY once and the subway system was incredible! We never did take a taxi though!

Can't wait to hear more about Nathaniel and his wish!

Jackie

Thank you so much Jackie for your kind words.

Was the subway confusing? I have a fear we are going to get off the wrong stop.

 

[mom2ajnm]

So thrilled you started your PTR! Poor guy has been through so much! Can't wait to read all about the planning and the trip. I've never been to NYC - so I'll have to "live" through your posts.

Thanks for joining us!! We are all so excited!!

I love his wish!!! That is a great and unique wish I haven't seen before! Hope you all have a great time and keep us posted!

Nathaniel did want to pick something that most of his friends have never done. He wanted it to be very special. Most of his friends have been to DL since we live pretty close and some have been to WDW. Nathaniel has only been to DL when he was 1. He doesn't remember it. He has a huge love for theater so this is perfect for him. It was a really hard decision for a 11 year old boy to make. I'll make a post tomorrow about his love of the theater!!

 

[mom2ajnm]

The "NYC" part of your trip report caught my eye! I went to NYC a couple of years ago (in October, and it was sunny, t-shirt weather!) and it was one of my favourite places I've ever been! I love Disney, so in the five days that I was there, I saw all three of the Disney shows that were on at that time - Lion King, Little Mermaid and Mary Poppins. The Lion King musical is absolutely my favourite show ever - so beautiful it makes me cry - I've actually seen it six times in five different cities! I'm sure I would love Newsies, too. There is a really, really great Disney Store in New York, close to Central Park I think. And this probably wouldn't be a highlight for an 11 year old boy, but for me I was so looking forward to seeing the real Christopher Robin's original stuffed animals - Pooh, Eeyore, Tigger and everyone else - at the New York Library where they are kept in a special room. Unfortunately, the room was under renovation during the time I was there - so if I went back, that would be at the top of my list! Other than Disney things, I also enjoyed Central Park (so much more beautiful than I had imagined), Statue of Liberty, Empire State Building, FAO Swartz, Brooklyn Bridge, and just walking around taking everything in. It's an amazing city, yummy food - I hope you and your family have the time of your life! Your son sounds like a wonderful, brave boy, and deserves so much to have a special trip.

Thanks for stoping by!! I was wondering what type of clothes we should pack. Being from AZ we have hot and hotter. Does it get chilly in the evening? His dream is to hang out with the cast from Newsies and tap on their stage. He also takes tap class. But he did list about 10 other plays he would love to see. I think Wicked, Lion King and Mary Poppins are on the top of his list.

Nathaniel loves books and he use to love Pooh Bear. I will have to look into the NY Library. I wonder if they have info on the room online? Is the library itself large?

Nathaniel will be excited to hear about the Disney store there. All of ours closed around here. I hope they carry Star Wars items! We have a HUGE list of things we want to do. We have 6 full days and 2 half days. The Dream Factory told me that last week they had a conference call with Newsies!! They like to keep some stuff secret so I'm not sure how much time we need to keep for his wish.

I'll have to post his list of to do's and see what people think we can skip.

 

[Lilfoot93]

Thank you so much Jackie for your kind words.

Was the subway confusing? I have a fear we are going to get off the wrong stop.

The subway was a little intimating at first! But we got the hang of it quickly... You'll do great! We went the end of October and a couple days were cold and wet and a couple days were sunny

Jackie

 

[mom2ajnm]

The subway was a little intimating at first! But we got the hang of it quickly... You'll do great! We went the end of October and a couple days were cold and wet and a couple days were sunny

Jackie

Thanks Jackie,

Did you buy a subway map or just use the ones on the walls?

 

[mom2ajnm]

Why the theater you may ask:

Summer of 2007 Nathaniel saw a Children’s theater perform a show at the hospital. He begged me to sign him up for a basic acting Class. His second class the instructor asked him to audition for a play the next week. Usually they only allow kids age 8 and up and he was only 7. He auditioned, got a call back and was cast in his first show at 7. After his first show he was hooked. He is currently in his 10th show. This is his 3rd show at a professional theater company!! He has the lead role as Colin in the Secret Garden!! Here is a great newspaper article that was written about him last December. I thank God every day that he has this gift and he fights through his pain to be in a show. So going to NYC to see Newsies and other Broadway shows is really him!!

Here is some pictures of past shows!!

His first show!! The Lion, The Witch and The Wardrobe

Jungle Book- Young Mowgli

Christmas Carol-Boy Scrooge-- Mic on one side and NG tube on the other!!

Murder at Crooked House-- Jeeves the English Butler-- NG tube still in

It's a Wonderful Life-- Newsboy and Tommy

Christmas Carol-- Tiny Tim

 

[mom2ajnm]

I re-sized all my photos so I'm not sure why they look huge?

 

[Lilfoot93]

Thanks Jackie,

Did you buy a subway map or just use the ones on the walls?

We had a map. That is wonderful that he is able to do theater! We just got Trevor in his first acting camp... Star Wars of course and he too loves it!

I hope he gets to see lots of shows when he is there. We seen Lion King in NY it was awesome!!


Jackie

 

[Sorcerer Jody]

Thanks for stoping by!! I was wondering what type of clothes we should pack. Being from AZ we have hot and hotter. Does it get chilly in the evening? His dream is to hang out with the cast from Newsies and tap on their stage. He also takes tap class. But he did list about 10 other plays he would love to see. I think Wicked, Lion King and Mary Poppins are on the top of his list.

Nathaniel loves books and he use to love Pooh Bear. I will have to look into the NY Library. I wonder if they have info on the room online? Is the library itself large?

Nathaniel will be excited to hear about the Disney store there. All of ours closed around here. I hope they carry Star Wars items! We have a HUGE list of things we want to do. We have 6 full days and 2 half days. The Dream Factory told me that last week they had a conference call with Newsies!! They like to keep some stuff secret so I'm not sure how much time we need to keep for his wish.

I'll have to post his list of to do's and see what people think we can skip.

Pooh and Friends are at the New York Public Library Children's Center at 42nd Street, in the Stephen A. Schwarzman Building at Fifth Avenue and 42nd Street. It is a beautiful library. I don't know what the display looks like - from what I've read, it seems to be understated but special.

A friend of mine just saw Billy Elliot in London and said is was AMAZING. That might be one to add to your list!

I am from Vancouver, Canada, so what is t-shirt weather to me might not be for you! I was fine with a light sweater for the evenings. I think it was warmer than usual for October the year I was there.

Have fun planning!

 

[mom2ajnm]

Nathaniel just got over a head cold and a concussion. At theatre practice a wooden piece fell off the bed and hit him right on the top of the head.. It’s been a long few days. Working on our top things we want to see in NYC.. Any input would be great!!

 

[mom2ajnm]

Lower Manhattan
What do you think? Is there something not worth seeing or did I miss something?

China town
Federal hall national memorial
Federal reserve bank
Statue of Liberty and Ellis Island
Wall street
Brooklyn bridge
Ground Zero
Tribute WTC Visitor Center
Museum of Jewish, memorial to the holocaust

 

[mom2ajnm]

MidTown
Empire state building
Macy’s
Grand Central terminal
Chrysler building
Rockefeller center
Top of the rock
NBC tour
Today show taping
Radio
St. Patrick’s cathedral
Time square
Good morning America taping
NBC studios
Flat iron building
Sony Wonder Lab

 

[mom2ajnm]

Upper Manhattan
Museum of natural history
Central park
Central park zoo

 

[mom2ajnm]

Does anyone know of any restaurants that are good with food allergies or that is gluten free?