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Old 09-21-2012, 05:01 PM   #1
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The trip of a lifetime for a very special boy!!

Thought i'd share our plans for an (hopefully!) upcoming trip of a lifetime for our family, but mainly for our son Owen.

Owen is 6, he is severely disabled both physically and mentally, his underlying condition is Menkes disease, unfortunately its also terminal and when we got his diagnosis after 2.5 years of tests we were told in a nutshell that he may only live for a few months longer, but he is 6 now and is our little star, the light of our lives and we have pretty much dedicated ours to making his a happy one!

Our hope is to take Owen back to Florida for a wonderful trip, we did visit Florida almost 2 years ago now with Make A Wish which was absolutely wonderful, Owen just loved it and the heat was great for him, unfortunately we only had a week out there and no sooner had we just settled then it was time to head back, so ever since then we have wanted to take Owen back for a much longer stay and to really soak everything up with a trip of a lifetime.

We have had trips to Disney Paris which is great and Owen just adores the whole Disney thing, DLP is so easy for us with the Eurostar which does make is much simpler, long haul to Florida is a different kettle of fish completely!

We have/are fundraising for a potential trip as it will cost quite a bit, due to Owen's severe disability we have no choice really but to go first class, he needs to be able to lie pretty flat quite a bit and things like changing him is not easy on a plane, they just have no disabled facilities at all, last time on his Make A Wish he was much smaller but it was almost impossible to change him, we had to do it on the floor of the galley area with stewardesses holding sheets up so nobody could see, an awful situation really. So the only realistic way now would be first class as Owen is bigger and at home we now have to use hoists to move him around alot.

We are aiming at 16 days sometime next year and staying within Disney itself, we can pretty much leave hiring any kind of car then as the odd days outside of Disney we can just taxi, it makes sense I think as we would need a wheelchair accessible vehicle otherwise which would cost a fair bit.

So there we have it, the unfortunate thing is that we always have to think of these trips away as possibly the last with Owen, his condition will get the better of him in the end and we know he is very much on borrowed time so we try and do our very best for him. Our aim in life is to make his life as happy as can be.

Here is a little piccy of our little star -

also a link to our website for him if anybody wants more info on his condition etc.


So hopefully Florida 2013 will become a reality.
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Old 09-21-2012, 05:26 PM   #2
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What a wonderful, special little boy you have. I hope your dreams of a holiday to Florida next year come true.
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Old 09-21-2012, 05:51 PM   #3
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What a lovely post..hope everything works out for your family and you can go again in 2013.

Do post to let us know how your plans are shaping up.

I know when I was looking at art of animation they seemed to have lots of different sorts of accessible rooms.
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Old 09-21-2012, 06:12 PM   #4
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I truly hope your trip next year will be Magical for your family. Please keep us updated of your plans.

Owen looks full of Character in that photo, what a cutie.

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Old 09-21-2012, 06:25 PM   #5
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Your little boy has the most beautiful eyes I have ever seen! I really hope you can give him such a magical trip :D
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Old 09-21-2012, 06:28 PM   #6
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What a lovely picture! We went to Florida in May with Make a Wish, my little boy is also disabled, he has a rare, life limiting form of epilepsy. We had such an awesome time at GKTW but it just flew by ... We are going back in October
So glad your little man has proved the professionals wrong ... These kids defy all odds I hope you manage to fundraise all the money needed x
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Old 09-22-2012, 03:03 AM   #7
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GKTW was just fantastic, such a lovely place filled with wonderful people, but like you say the time just flies by, 2 days pretty much with the travelling etc which doesn't leave much time, we missed Universal and just did Disney and Seaworld as we have to take it a bit easy for Owen, can't just hit the parks etc at full speed!

Hopefully things will work out as we plan, it really is a pain having to go first class though, as nice as it is the cost of it is ludicrous and thats whats difficult, airlines just don't seem to cater at all for passengers with severe physical disabilities, no toilet to use etc, its just crazy.
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Old 09-22-2012, 03:36 AM   #8
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Beautiful post I hope you get to go on a wonderful trip next year . I travel with my brother who is mentally and physically handicapped hes is 39 years old so I know all too well about no changing facility's. We have no choice but to change him when we get off the flight we change him just before we get on and hope for the best. The great thing about America is how wheelchair friendly it is we get to so much with him that we have trouble doing here.

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Old 09-22-2012, 06:00 AM   #9
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What a great 'Little Star' and hope and pray your plans all come together for 2013.

Check out the following which I've copied from the web-site links below and it might be an option for when Owen is eight and older, but it does indicate it's a trip without the family, so it might not be an option that you would or could consider but if it is then keep it in mind for 2014 and beyond.

Retired and current BA cabin crew set up a charity call 'Dreamflight' it changes young lives by taking seriously ill and disabled children from all over the UK on a life-changing holiday to Orlando.

Dreamflight, which has operated every year since 1987, believes that fun and joy are just as important as medical research and equipment.

A British Airways Boeing 747 is chartered once per year and children spend 10 magical days away from family, to discover independence, confidence, and a whole new outlook on life.

Many could not undertake such a trip without the support of the army of doctors, nurses, physiotherapists and non-medical volunteers who care for the children 24 hours a day.

Hope the information is helpful, enjoy planning your 2013 holiday and good luck with your 'Events & Fundraising', laughed when I read that Owen's brave Grandma jumped out of a perfectly good plane!!! Did he enjoy it?


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Old 09-22-2012, 06:02 AM   #10
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Awww your son is beautiful! I genuinely hope everything goes according to plan and that you and your family enjoy the trip of a lifetime!
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Old 09-22-2012, 06:45 AM   #11
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I so admire what you are doing for your beautiful son. I really hope that all your plans work out and that you fund raisers are successful.
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Old 09-23-2012, 04:24 AM   #12
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Thanks for the replies.

We did look at Dreamflight but due to the complexity of Owen's condition and needs we would never leave him with anyone else, plus he's such a mummy's boy and loves his cuddles too much. We had a disaster in 2010 when my wife left Owen at the hospital for 30 mins to pop home and get some stuff, Owen was fine when she left and they were talking about discharge the following day or so, however when she got back to the hospital he was in a right state, I think he had choked a bit as he had severe reflux then, he just went downhill so quickly, overnight was awful and the next day they prepared us for the worst, they got him on life support and whisked us off to a much larger hospital where Owen spent a month on life support and it was the worst time of our lives, we really thought we had lost him. But it all came good in the end and 5 months later he was his old self again.

As you can see with stuff like this going on we just never leave his side now in the hospital.
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Old 09-23-2012, 05:17 AM   #13
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i hope your trip becomes a reality!!
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Old 09-23-2012, 06:17 AM   #14
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What a lovely photo of your beautiful son.

I had never considered that the facilities in economy do not meet the needs of disabled passengers - it's outrageous! I hope your trip becomes a reality and is everything you want it to be.
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Old 09-23-2012, 08:33 AM   #15
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If you are flying with Virgin and not done so already try contacting their special assistance team on 0844 412 4455, they may have some answers that might make flying a little easier.

Also could booking two premium seats for Owen or two-three economy seats behind the middle galley where he could lay out be an alternative and therefore cheaper than First for you all?
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