The trip of a lifetime for a very special boy!!

owensdad

Mouseketeer
Joined
Apr 11, 2010
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144
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 -
IMG_3939.jpg


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

www.owenmorrison.co.uk

So hopefully Florida 2013 will become a reality.
 
What a wonderful, special little boy you have. I hope your dreams of a holiday to Florida next year come true.
Rach :)
 
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.
 
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. :goodvibes
 

Your little boy has the most beautiful eyes I have ever seen! I really hope you can give him such a magical trip :D
 
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 :goodvibes
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
 
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.
 
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.
 
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?

http://www.dreamflight.org/

http://www.onedestination.co.uk/com...nity-and-conservation-programme/dream-flight/
 
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! :goodvibes
 
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. :goodvibes
 
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.
 
What a lovely photo of your beautiful son.:goodvibes

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.
 
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?
 
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?

We did look at that, Virgin aren't really the most helpful in these situations, they don't really bend much to the needs of severely disabled in my experience. We thought about 2 premium seats but this would cost as much as 1 first class, and the 3 economy option would be the same, maybe a couple of hundred cheaper but not sufficiently cheaper to choose that option, I really can't see any other way around other than first class as we need the space to change him when needed and we also need a good lying down position.
 
My son was tube fed, needing a pump to be fed, as well as needing special meds administering also and in nappies so we needed a great deal of space, I will say that virgin were great for us.

I would certainly say that there are cheaper options than first class to get your son there. The Premium option would be cheaper than first class.

So what are you doing to raise funds?
 
Your son has the most amazing eyes and smile. Good luck with your fundraising as he looks a very special boy.

Tina
 
My son was tube fed, needing a pump to be fed, as well as needing special meds administering also and in nappies so we needed a great deal of space, I will say that virgin were great for us.

I would certainly say that there are cheaper options than first class to get your son there. The Premium option would be cheaper than first class.

So what are you doing to raise funds?

What did Virgin do for you with regards to space? When we went for Owen's Make A Wish we travelled in economy, it was a struggle with him even then when he was much smaller, the tube feeds and giving him his meds are not a problem at all, it all goes through the button and job done, very simple, but his sheer size now (he is like a 9/10 yr old) and weight would make it impossible, the seats in economy don't recline much at all, same with premium economy, and as Owen needs to use a special seat insert aswell it doesn't help with the situation, and sitting normally for such a long time would really be painful for him as he has developed scoliosis in the last year, probably due to his weight gain and the result is that we now have a nice curved spine which doesn't bother too much as long as his position is changed frequently.

Not only the above issues are what we have to overcome, we can no longer lay Owen on the floor to change him like we did last time we went, it was fairly easy to scoop him up back then but these days we have to use a hoist to get him off the floor, he's just such an awkward load to handle due to having no rigidity in him at all, imagine picking up a big bag full of water, thats almost what its like and it makes his 30kg feel much much heavier and awkward to move around.

To be honest i've mulled it over and over and really can't see any other way due to the needs Owen has, on the planes there just isn't the space to work with, and lets face it, changing his incontinence stuff on the galley floor is not good, ignoring the fact i'd never lift him back up again, its just not dignified.

As for fundraising, we haven't done a great deal at all yet, some friends have done auctions, nights out etc which have been wonderful, but it does take a huge effort and time is always against us, it was hard last year raising funds with a skydive and lots of other things and took alot out of us, but it was well worth it, we raised a nice total and used some for his last trip to Disney Paris and gave half to the Menkes Foundation. We will obviously come up with more things and just work and save as much as we can, but like I said time is the one thing that really works against us as I work all hours and my wife has her hands mainly tied with Owen's needs and our daughter Olivia who has just started school.

But, despite it all we are very much determined to do this, our lives exist purely for Owen and Olivia, and whatever needs to be done then so be it, we love our life and wouldn't have it any other way, it may be selfish to some but in our eyes there is nothing outside of our two children.
 
would it maybe possible to have a extended trip and do a 6 day transatlantic crossing ? they start from 599 ( so im assuming not more than first class)
 

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