The TMA Children’s and Family Workshop The Workshop: A Visit from Denmark Mette and Thomas Nybo Adam was hit by TM on June 15th 2001 when he was 13 months old. He was paralysed from the neck down, but has made a lot of progress and is now able to walk with a walker. He’s still quite spastic, and has some bladder problems. His arms and hands are fine. When we first heard about the Children’s and Family Workshop in Columbus, Ohio last winter, we were sure that we would never afford to go there, but were looking forward to seeing the follow-ups on the internet. Fortunately, Adam’s aunt encouraged us to try and do some fundraising and to find out how much it would actually cost us. And so we did. Some really nice people helped us find the money for the flight and the stay at the hotel, and the air line company also let us have a discount because of Adam’s story. And so we were able to go! It was to be a great weekend for all three of us. Like many other parents (and kids) we had the experience that for the first time, people didn’t look confused when hearing the word of Transverse Myelitis, and for the first time, we saw other kids and adults living with the same problems as us. A lot of feelings went through us these days, both of joy seeing all these cool kids coping so well with their disabilities, of sadness realizing that our son is a child with ’special needs’ and probably will continue to be, of anger thinking about how unfair this disease is, of relief acknowledging that Adam is very lucky compared to what he could have been, etc, etc. The whole workshop was packed with information, and we had some new points of view that we have brought home to discuss with our neurologist and our PT.  Fortunately, we were also confirmed that we have received a very good treatment and rehabilitation in Denmark. We were very happy that the participating specialists stayed at the hotel all weekend, so that everybody had a chance to discuss their special needs with whomever they wanted to. A special thank you to Doctor Kerr who took the time to evaluate Adam’s MRIs with us and actually found a minor inflammation at the C-level that we hadn’t heard of before (Adam’s diagnosis was just at T6 and below), and which explained a few things to us. And, of course, we were happy that he told us that Adam should have quite a good prognosis! Adam spent the days at COSI and at the ZOO, and he quickly fell in love with his special person, Hanni, who did a great job taking care of him. Thank you, Hanni!  He also enjoyed the swimming pool, and kept asking for it for several days when we had returned back home.  And he loved Maureen’s songs.  We hope we’ll be able to go back some other time and meet up with all his and our new friends. Finally, we would like to thank Sandy for being such a great, loving person, and for doing such a great job with this workshop! (and the food was great too!) Greeting to all the families that we met in Ohio. We are interested in being in touch with TMA members in Scandinavia.  Please feel free to reach us.  We would be pleased to share information and support. Adam, Mette and Thomas Nybo Hillerodgade 175 2. TH Copenhagen 2400 Denmark 45 38162856 rommba[AT SIGN]hotmail.com

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