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Old 06-02-2010, 02:01 PM   #1
owensdad
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Owen's Make A Wish trip to GKTW & Disney PTR

Hi folks, time to share our story so far so here goes.

Our first child, Owen was born in September 2006, he is just the most perfect little boy in the world! pregnancy and birth were textbook and all was well for a few months, as time went on it was very clear that Owen wasn't getting to where he should be at the right times in his development. After his 1st birthday he was refered for an MRI scan which showed alot of brain damage amongst other things, this now explained most things but still it wasn't a proper diagnosis of the root cause of things. Time goes by and we fleet from hospital to hospital and Owen goes through a whole host of tests, still no clear diagnosis.

In August 2008 our daughter, Olivia was born, the most beautiful little girl in the whole world! Now we have a complete little family!

We head into 2009 and yet more testing for Owen, its very plain to see now he is severely disabled and needs lots of special equipement (wheelchair, feeding pumps etc), they cant seem to figure things out so the doctors start genetic testing at a deeper level than before, this reveals all.

In late Feb 09 we get the worst news in the world, Owen has a final diagnosis of a condition called Menkes disease, we knew Owen has severe disablities but this news literally hit us like a freight train, it was just awful knowing that the light of our lives had this terrible incurable condition and wouldn't live very long, 90% of children with the condition dont make it past 3 years of age. The condition is a genetic progressive degenerative disorder that affects the gene responsible for carrying copper around the bodd, it overloads major organs with too much copper and starves areas (ie the brain) which causes the massive brain damage. The condition only affects boys which meant Olivia is just fine.

In March some friends on an internet forum raised some money to send us all to Disneyland Paris which we did last September, it was just the most magical time and Owen loved it, it was touch and go as to wether we would make it as he had been in and out of hospital all summer and he only got discharged the day before we went! Since the Disney Paris trip he has been on top form, staying out of hospital, although he had a major bladder operation in Feb and managed to get pneumonia last month but got over it pretty quickly.

Having been refered to Make A Wish we decided Owen would love to go to Florida to Disneyworld, they obliged and we are going in December (6th to 13th), we are staying at Give Kids The World which Owen and Olivia will absolutely love, we couldn't have asked for a better place to be staying.

Any ideas or tips for us would be great, especially to keep Olivia amused on the 10 hour flight as we are based in England, not looking forward to driving out there as we drive on the other side over here!!
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Old 06-02-2010, 02:11 PM   #2
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Im here to follow along with your PT you will have a blast and this is a good site everyone feels like family here
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Old 06-02-2010, 03:29 PM   #3
rcq925
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I am subscribing! I am so glad that Owen is getting his wish.

I am so glad that he has been doing so well

Wow, Disneyland in Paris! Sometime you will have to share some pictures and stories from that trip! I would have loved to have gone there, but Hayley's wish was for Disneyworld as well.

We are going November 14th through the 20th, so I will be able to fill you in before you leave on my trip!!
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PTR- http://www.disboards.com/showthread.php?t=2450895

TR- Hayley's Magical Make A Wish Trip-
http://www.disboards.com/showthread....7#post39032507
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Old 06-02-2010, 11:48 PM   #4
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subscribing here too!
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Old 06-03-2010, 04:56 PM   #5
cantwaittoseemickey
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I'm subbing as well. Wow Disneyland Paris! I bet it was amazing!
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Old 06-05-2010, 09:46 PM   #6
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Can't wait to follow along. Disney in December is just beautiful.
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Old 06-06-2010, 01:26 PM   #7
owensdad
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We are hoping its nice, according to the weather stats ive read it looks more like what our summers are over here so it should be very comfortable for us, before we had the children my wife and I had a Florida holiday in June/July 2003 and really enjoyed it, although i've never felt heat like it!

I'm seriously hoping Olivia will be ok on the plane, a 10 hour flight for a 2.5 year old god help all the other passengers! she will terrorize them! Owen should be ok, i'm sure he'll just chill in the special seat and probably sleep most of the time.

For anyone thats not been to Disneyland Paris, it's superb, we really enjoyed it and we are heading back there for a week 3 months before we go to Florida, for us in England its real easy, 2 hour drive to London then Eurostar train straight into Disney, couldnt be easier and probably around 5 hours in total, the Eurostar is very nice too, if you go into 1st class its roomy and the food is excellent.

Whats the driving like in Florida folks? i've never driven in any other country so pretty much dreading it, is Disney and Seaworld a good drive from Give Kids The World or just a few mins? any tips? I think I should bring my satnav!
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Old 06-06-2010, 02:04 PM   #8
wish_upon_a_star35
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I am really glad that Owen has been granted a wish! I am definitely subbing to your PTR!

All of the parks are actually very close to Give Kids the World. I'm thinking around 20 minutes away!!

We went last year in Feb. I don't think we even encountered a great deal of traffic. However, we are going in a few weeks and I bet it's going to be a lot different!
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My PTR Link: http://www.disboards.com/showthread....1#post35960268

We're home! Our June TR!:http://www.disboards.com/showthread.php?t=2502990

We are REALLY going to the castle!! A May 2012 Trip Report!http://www.disboards.com/showthread.php?t=2927349
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Old 06-06-2010, 03:52 PM   #9
annmarieda
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I am subscribing too! How wonderful that Owen can get a wish!


Quote:
Originally Posted by owensdad View Post
Whats the driving like in Florida folks? i've never driven in any other country so pretty much dreading it, is Disney and Seaworld a good drive from Give Kids The World or just a few mins? any tips? I think I should bring my satnav!

I have driven in Orlando a few times. I think it is pretty easy compared to some large cities in the US. The only snag I find is the tole booths. You should be fine.
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Old 07-24-2010, 12:13 PM   #10
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Hi
Newbie here. Just wanted to say you will have a blast a Disney World. Glad Owen got his wish.
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Kerri-19,Korissa(wish Child) 17, Kyra 15, Steven 11, Kylee 8 (post wish child),
PTR..http://www.disboards.com/showthread....1#post37518385

TR..http://www.disboards.com/showthread.php?p=40564833

http://www.facebook.com/HopeforKylee
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Old 08-10-2010, 12:07 AM   #11
hgpiglet
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New here as well, I'm really glad that Owen is getting his wish!
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Old 12-10-2010, 01:16 PM   #12
owensdad
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Thought I'd give a quick update as I haven't been here for a while. We have had to postpone Owens wish trip as he has had a horrid time recently, he spent most of October on life support and we were very close to losing him, he is on the mend now though but still has been picking up the odd infection and cold etc, it would have been too much to get him on a plane for a ten hour flight so it's now booked for March 21st. In the meantime Owen will have a much needed operation soon so hopefully once that's done he can have a good couple of months health wise and be fighting fit ready for Florida.
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Old 12-10-2010, 01:22 PM   #13
Emilyswish
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Oh I am so sorry to hear he was having such a hard time and that your trip had to be postponed. I hope he continues to feel well now and you all get to go in March!
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