Starlight, Star bright, Give Kids The World tonight - October 2018.

[PrincessCastle]

Hello and welcome to another one of my pre trip reports!

First up, the usual introductions...

There’s me, Alix. I will have just turned 30 when we go. Ho Lord I hate saying that!
I’m the chief planner, organiser, ADR booker, photographer and generally the boss of our holidays (and the rest of the time but don’t tell Ross!).

There’s the husband, Ross, 29. He’s chief plate cleaner, wing eater and beer drinker. He just wants to eat and eat and eat!

Now usually on the honorary cast list, these two have been bumped up to the top spot and we’re actually taking them with us this time!

Oliver, our cast member of honor! He’s 7. He loves Star Wars, Toy Story, the Avengers and Sonic the Hedgehog. He hates that nowhere sells sonic toys so Disney World is just going to be one massive disappointment. He’s our super hero!

And Ariana, who will be 5 when we go. She loves Disney Princesses, dressing up, dancing like a loon, singing and watching grown adults play with LOL dolls on YouTube. She’s our super star!

Our honorary cast member this time is baby Jack who will be 10 months when we go. He’s going on a little holiday of his own to his Nana and Grandad’s in Peterborough.

A little bit of back story about how this trip came about. Apologies if you already know this story, please feel free to skip!

The day after Ross and I returned from our 2016 Disneymoon, we received the news that Oliver had been diagnosed with Muscular Dystrophy while we were away. At that point they were still testing to find out which type of MD he had but we were hopeful it wasn’t going to be the worst case scenario.
Unfortunately it was, in January 2017 we were told that Oliver has Duchenne Muscular Dystrophy. This is the most aggressive form of MD and will significantly shorten his life.
In brief, DMD is a neuromuscular disease which overtime will weaken his muscles starting from his legs and gradually weakening his heart. Most boys with DMD are in a wheelchair fulltime by early teens, loose the use of their arms by late teens and have a life expectancy of late 20s to early 30s.
It sucks. It’s awful. But we’re getting through it as a family and we are determined to give Oliver the best life ever.

At the moment he is still on his feet and is on a steriod treatment which his improved his mobility greatly even if it is temporary. He does have his funky wheelchair for long excursions like trips to the Metro Centre or walking into town and back.

One thing Ross and I both agreed on soon after the diagnosis is that we needed to get Oliver to Disney World while he could still walk. He’s been desperate to go there and do the Jedi Training and meet Chewy. We want him to be able to do it at least once without a wheelchair.
Although we bought into DVC in 2016 we only bought 50 points and since we are saving for a house we can’t afford to fund a Florida holiday ourselves right now so we needed help.

So we turned to Starlight Children’s Foundation. They are a charity similar to Make A Wish. We opted for them as they can grant wishes outside of Europe which Make A Wish cannot. They sent Oliver some ‘Wish Forms’ and we started discussing what he wanted to wish for.
There was absolutely no involvement from us, we didn’t tell him what to wish for. I just said he needed to chose three different things for example, somewhere to go, somebody to meet and a special treat then rank them in preference order.

He chose to go to Disney World, meet Chris Pratt and have a Star Wars bedroom makeover and ranked them in that order. To be honest I was secretly hoping Chris would make the number one spot!

Frickin yum

Then on 9th October I got a phone call from Stephanie, our wish granter. She confirmed that they would be granting Oliver’s first choice wish and we were all going to Disney World!
There were a lot of forms to fill in about Oliver’s needs and medication etc but the only other thing we needed to do was to choose dates.
After a bit of tooing and froing we settled on a fly date of 12th October. Due to their insurance restrictions we can only go for a week so we would be flying back on 19th October. The following week is our half term so it gives the kids a good chance to recover before going back to the grind! Going in October means it wont be baking hot for the kids and we will get to go to the Halloween party!

We will be flying with Virgin courtesy of Starlight. We really enjoyed flying premium with Thomas Cook in 2016 so we asked about doing it again. Starlight could certainly sort that for us as we would just need to pay the difference, great! Except Virgin are actually insane and it would have cost us well over £2500! Just slightly more that the £200 we paid to upgrade our return flight with TC in 2016.

We will be staying at Give Kids The World which is a nonprofit holiday resort in Kissimmee for children with terminal or life limiting illnesses and their families.
This place is insane! It has a theater, mini golf, playground, fishing pond, swimming pool, stables, mini railway line, carousel, ice cream parlor to name a few things. All wheelchair accessible, naturally!
They have Christmas once a week, a Halloween party once a week, weekly 'Village Idol' competition and other daily events. They strongly encourage you to go to the ice cream parlor for breakfast and they get constant visits from various Disney and Universal characters.
It sounds like a dream and I can't wait to go! You need a week just to see everything there!

Starlight can’t apply for the insurance until 8 weeks before we fly and they cannot 100% guarantee it will be accepted so until then we will be keeping this a closely guarded secret until then! They are almost certain we will be fine as its mainly the children that need lots of equipment and daily medical care that can’t get insurance but Oliver only has a manual wheelchair and daily steroids to take so I have no worries!

I’ll leave it there for now. I will give another update soon but for now I need to get back to finishing our honeymoon report!

Check back in for some more info soon!

The Bennetts xx

[Goldia]

What a special place! Give kids the world sounds amazing.

I hope everything works out with the insurance, from what you say it sounds positive but I can understand why you would want to keep it secret until you are certain. The bonus of that though is you get to plan a surprise reveal!

[GALE88]

I hope you all, and especially Oliver, have an amazing time.

[Jesslydevie1]

I hope you all have an amazing time , we have stayed in give kids the world also as it was our daughters wish ,wishing you lots of happy memories xxx

[den-kjr]

Hi
We went to give kids the world in May 2016 (daughter has a cancerous brain tumour)
We didn't go through a wish company if your worried about insurance you could do a few quotes for yourselves we got insured through insurancewith give kids the world were happy for us to do this. The first quotes we got were for thousands but insurancewith was around £160 for all of us for 3 weeks
Give kids the world is amazing and something we will never forget - we are going back to visit for the day when we go in June any questions feel free to pm me xx

[PrincessCastle]

Originally Posted by Goldia

What a special place! Give kids the world sounds amazing.

I hope everything works out with the insurance, from what you say it sounds positive but I can understand why you would want to keep it secret until you are certain. The bonus of that though is you get to plan a surprise reveal!

See more...

I know! I have no idea how I’m going to do the reveal though. I think Starlight help out with that but I will let you all know what I’m going to do.

Thanks for reading ☺️

Originally Posted by GALE88

I hope you all, and especially Oliver, have an amazing time.

See more...

Thanks you! I’m so excited.

Originally Posted by Jesslydevie1

I hope you all have an amazing time , we have stayed in give kids the world also as it was our daughters wish ,wishing you lots of happy memories xxx

See more...

Thank you. So looking forward to staying there. I hope your daughter had an incredible time there.

Originally Posted by den-kjr

Hi
We went to give kids the world in May 2016 (daughter has a cancerous brain tumour)
We didn't go through a wish company if your worried about insurance you could do a few quotes for yourselves we got insured through insurancewith give kids the world were happy for us to do this. The first quotes we got were for thousands but insurancewith was around £160 for all of us for 3 weeks
Give kids the world is amazing and something we will never forget - we are going back to visit for the day when we go in June any questions feel free to pm me xx

See more...

Thank you I’ll keep that in mind about the insurance! Sending lots of love to your daughter. Have an amazing time in June!


Thank you all for reading and commenting ☺️ It means a lot!

[JackyH]

Wow it all sounds amazing. I hope you all have the most amazing time and look forward to reading all about your trip.

[PrincessCastle]

Originally Posted by JackyH

Wow it all sounds amazing. I hope you all have the most amazing time and look forward to reading all about your trip.

See more...

Thank you! I cannot wait to tell the kids. Thanks for reading

[danisleigh]

Your trip sounds amazing! My son who had a rare liver disease and has recently had a transplant had a wish trip 2 years ago but through make a wish foundation and he chose a Disney cruise! we had an amazing time, he was treated like royalty! He is 16 now but still talks about it!

[Floridajill]

Sounds like an amazing trip. We too stayed at Give Kids the World in April 2014 and had an amazing time. You will love it! We make a point of going back to visit if we can to relive all those special memories.