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Get Tim to St Louis

  • There and back again

      3 August 2015

    Well we did it and we are now back home and over the jetlag. What an adventure for Tim - and a different sort of adventure for me. I survived but it was a busy and tiring time. The funds generously given enabled us to cover Tim's airfares and contribute some towards accommodation and other expenses. Thanks again so much to all who gave so generously.

    I have posted lots of photos of the trip on my facebook page https://www.facebook.com/john.forman.125 These cover the 3 nights in Hollywood, seeing the sights, doing Universal Studios, and hanging out in the pub and café scene. Tim just loved it all, especially the movie related items. And the rides at Universal Studios were just SO GOOD. We then travelled to St Louis where John's conference and meetings were. Tim had support workers looking after him and an activity programme with lots of other children and adults with the same or similar diseases. He got to the famous St Louis zoo, the baseball museum, a baseball game, and other sightseeing. He also needed a couple of long sleeps on two afternoons to recharge his batteries, and fatigue is certainly one thing that goes with Alpha-Mannosidosis. After 5 nights there we moved on to Washington where Tim took part in an evaluation at the National Institutes of Health, to help understand the course of this disease. Our last day in Washington gave us time to visit the White House, Washington Monument, WW2 memorial, Lincoln Memorial, and nearby features. He slept nearly the whole time on our flights back home. He had an absolute whale of a time on the trip. I really enjoyed spending so much time with him too.

    At the end of it he was a little weepy. He had such a great time I think he just didn't want to get back to life as it used to be. of course we all know that feeling don't we. It leads to immediate decisions to start saving for the next trip. You guessed it - that's exactly what he said he was going to do. :) :)

    perhaps, one day, but it might take a lotto win.

    Thanks again to all the generous donors. We could not have done it without your wonderful help.

    John and timothy

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  • 7 days to liftoff

      11 July 2015

    Each time we talk to Tim about the trip he thinks departure date is tomorrow. But we are getting closer. Just 6 more sleeps. Now I'm starting to get excited too. :) :)

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  • First big steps towards Tim's trip of a lifetime

      31 May 2015

    We told Tim about the trip last week. Any sooner and I think he'd burst with the anticipation. 8 weeks is still quite a bit to cope with. Flights are booked and we are now checking out some things to do during a couple of day's stopover in LA on the way there. Hotel in St Louis is across the road from the ballpark so there is certain to be a baseball game in his schedule. Then there will be a quick trip to the Capitol and the White House at the end of his clinic appointments at the NIH in Washington. Working on the rest of the activity plan. Thanks to everyone for their awesome support. Regards, john

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