Annika's Make A Wish Trip.

[Rx774]

Good Afternoon, i'll try to keep this Pre-Trip Report brief. I've actually told this story before already on here, but i did it with my son's MAW Trip Report, so i'll try to give you guys the cliff notes version this time around. I have a lovely 11 YO daughter, that means the world to me. She was born in 2001, and shortly afterward diagnosed with a rare metabolic disorder called MSUD. It basically prevents her body from metabolizing high amounts of protein. Too much protein in her system, eventually works its way to the brain, where it can become toxic and starts to damage the brain. In dozens of occasions over the years Annika has lost the ability to hear, walk correctly and even talk correctly, and has even seizure.

Annika and her brother Christian

In a perfect world, just monitoring her protein intake would be a perfect balance. But unfortunately with this condition, other things can set it off like stress, colds, any type of infection that messes with your body's metabolism. She has been given excellent care at Philadelphia's Children's Hospital. About 6 years end, after thinking we'd have to deal with this forever, it was brought to our attention that a liver transplant would make it easier to cope with her disease. While not being a cure genetically, it would offset all the negative effects of MSUD, while allowing her to eat a normal diet. We at first put it off, thinking it was a bit too much for a young child to endure, but after a bad spell with my son Christian (also born with MSUD) which almost lead to his death, we decided to no longer gamble with this disease. MSUD can and has unfortunately taken people out at any age. So if we were going to get it done with 1 child, might as well do both.

Prior to getting ok'd for the transplant list, they have to make sure your body is physically ready. Upon scans, they discovered she had a hole in her heart. To my surprise... it was a day procedure. She was home the next day. Its amazing what our medical science can do. Snaked the tools right up her femoral artery, and closed up the hole from the inside. Anyway, she was ready, and eventually got her transplant. We've even made friends with the parent of the her donor, which is extremely, extremely rare. Even made the local newspaper in doing so.

Anyway, our wish granters came last May and listened to Christian and Annika's Wishes. She wanted to do a Disney Cruise, and no way we could of done it by August, that close, especially since we didn't have passports yet. So we did Disneyland/Universal Studios last year, and this year, Annika gets her special wish .. a Disney Cruise in Mid-August (right after her birthday). We can't wait!!!

 

[Skybabyy]

<333

Touching and incredible story, I am so excited to read on and hear about your magical time together on a Disney cruise!! Your children are beautiful

 

[Lilfoot93]

I am so glad Annika gets her wish!

Jackie

 

[Rx774]

Thank You both.

 

[angel's momma]

So sorry that Annika & Christian have been through so much. So glad Christian got his wish, and that Annika will be getting hers. When someone posted on the Wish Trippers thread a few weeks ago about going to DL instead of WDW, I was curious about how it was handled there, and read part of Christian's TR.

Is everything set for Annika's cruise? Like dates, excursions, accomodations, etc?

With Angel's cruise potentially in April, I'm stressing out over passports, etc.

 

[Rx774]

So sorry that Annika & Christian have been through so much. So glad Christian got his wish, and that Annika will be getting hers. When someone posted on the Wish Trippers thread a few weeks ago about going to DL instead of WDW, I was curious about how it was handled there, and read part of Christian's TR.

Is everything set for Annika's cruise? Like dates, excursions, accomodations, etc?

With Angel's cruise potentially in May, I'm stressing out over passports, etc.

Yes, indeed. We sail off on the 18th of August. Don't know anything else yet, that's why i try to pay attention to those families who also have cruise's. We were told last year, that MAW tries to plan other events to make up the remainder of the days. So we'll see. To me... the cruise is enough.

Places like here, are the only place were you can discuss MAW, where people can relate. Don't get me wrong, close family and friends understand your plight. But i can recall telling coworkers about my son's upcoming MAW trip, and you can tell by the look on their face was like, "Wow, you are getting all this for free???" Internally, i'm saying, i will trade in 100 free Disney trips for my children, never to have endured what they've gone through so far. My daughter, especially, suffered for years behind her illness.

 

[angel's momma]

We read all the MAW cruise trip reports too, and they seemed to be consistent in the details, so we thought we had a pretty good idea what to expect, but so far our experience has been very different.

Too often we've had comments made about how "lucky" Angel is - getting a cruise, not having to go to school (though she was heartbroken over it), that she doesn't have cancer. People simply don't understand what our kids (and families) have to go through.

 

[pinkorange]

Thank you for the msg on Helena's PTR. We are also a CHOP family.

I completely agree with you that it is nice to find people who can relate a bit to what your are going through. These MAW trips give our children so much to look forward to and help them to feel like regular kids for a little while. I don't think anyone who hasn't been touched by a serious illness can truly understand what it is like. It's like the people who say that they have pets (but no children) and think that their pets are exactly the same as children. I don't quite think they really get it. I love my pets, but I LOVE my children in a much, much deeper way.

 

[angel's momma]

 

[NEmel]

Hi! Sounds like your kiddos have been through so much. I'm so glad Annika is getting her cruise wish. What cabin do you all have? Have you decided on any excursions yet?

 

[Tink-erin-belle]

What a touching story about your kids! I am glad that Annika and the rest of your family will get to experience this cruise! And right after her birthday! That is fantastic. I have always been interested in Disney Cruises. Where are you guys going?

 

[wiigirl]

I am so glad Annika gets her wish!

 

[lennymore]

Your children are just beautiful. Can't wait to read the TR - I'm a wish visitor here in the UK for Make A Wish and have the privilege of visiting these wonderful children and their families to find out what their wishes are. It's fab to hear the stories and memories after the wishes have been granted!!

 

[angel's momma]

 

[Rx774]

What a touching story about your kids! I am glad that Annika and the rest of your family will get to experience this cruise! And right after her birthday! That is fantastic. I have always been interested in Disney Cruises. Where are you guys going?

We are boarding the Disney Dream and going down to the Bahamas. We are soooooo looking forward to this. With it being 4 months away soon, we didn't get an official itinerary yet, so we don't have room info. But that should be coming in the mail in a couple months.

 

[Rx774]

Thanks Wiigirl and Angel's Momma.

@Lennymore. Thanks. I took go to these MAW stories, just so that i can read what all the families have gone through, just so that i can know that we aren't alone (as parents) in regards to dealing with sick children. I think i mentioned before how part of you doesn't feel worthy when you accept these trips. Until somebody points out that you've been through a lot, and you deserve this.

 

[2012bella13]

I just read your sons trip report, and I hope all goes well for your daughters.
I understand where you are coming from about people not understanding. My DD has Evans Syndrome, it is where her body turns on itself, I hear from people "She can out-grow this" - no, it is something you do not out-grow, it goes into remission, & if we are fortunate she will stay in remission.
My daughter had her Make a Wish trip in 2011, I did not know about DisBoards then.
I am looking forward to reading more about your daughters trip.

 

[Rx774]

I just read your sons trip report, and I hope all goes well for your daughters.
I understand where you are coming from about people not understanding. My DD has Evans Syndrome, it is where her body turns on itself, I hear from people "She can out-grow this" - no, it something you do not out-grow, it goes into remission, & if we are fortunate she will stay in remission.
My daughter had her Make a Wish trip in 2011, I did not know about DisBoards then.
I am looking forward to reading more about your daughters trip.

Yeah, when something exists on a genetic level and is ongoing, there is no "out-growing" the situation. The transplant was the only way out of the MSUD. And even know, we've had many complications since then, in regards to their respective livers. So you are really never out of the woods.

Oh well, who said parenting / raising a family was supposed to be easy.

 

[angel's momma]

When are you able to book excursions, etc? Do you know what you're going to choose? Do you know your state room ? Are you doing the FE, decorating your door?

 

[Rx774]

When are you able to book excursions, etc? Do you know what you're going to choose? Do you know your state room ? Are you doing the FE, decorating your door?

I've read about the Fish Extenders, seen people's doors decorated in the pics here, i know very little about how the process goes.

We still don't have our room yet, waiting for some last minute paperwork to be sent from Annika's doctor. Can't believe, its only about 5 weeks away, it felt like 5 months not too long ago.