Clinical picture: Prader-Willi syndrome
Family Klasfauseweh writes:
In the summer of 2004, after waiting for about two and a half years, the organisation dolphin aid e.V. sent us the message that a place on the treatment programme would become available for our handicapped son Jonas. In late March 2005 it was finally time, and now we would like to share our experience, especially for other affected families.
About the organisation: dolphin aid e.V. is a non-profit association which was founded in 1995 by Kirsten Kuhnert, herself an affected mother. The first therapy centre, Dolphin Human Therapy by Dr. David Nathanson, was opened in Florida and followed by another one in early 2004 on Curaçao (Netherlands Antilles). Further locations are planned, due to high demand and thereby shorter waiting times. You can get detailed information about the organisation and this kind of therapy online at www.dolphin-aid.de or via dolphin aid e.V.; Angermunder Str.9; D-40489 Düsseldorf, Germany.
After studying the preliminary reports about the organisation dolphin aid, the whole family travelled to Curaçao in late March, having no expectations at all. But on the first night we could already feel a very cordial mood and atmosphere among all therapists and helpers of the CDTC (Curaçao-Dolphin-Therapy-Center). The travel organisation itself was a masterpiece (we even were supplied with food in our apartment, so that we didn’t need to rush to the supermarket on our first day).
About our son: Jonas is five years old and has Prader-Willi syndrome. This is a very complex dysfunction with physical, metabolic and mental symptoms. These include muscle hypotonia and dysfunctions in the central nervous system from the day he was born. So far, his language is hardly pronounced, so that we only can guess what he wants, and he can only stand aided for at most twenty minutes. He can only walk with help on both hands, and this is possible for a short time. Jonas has been getting a growth hormone therapy for the last two years, and the remedy Genotropin promotes the fat burning in his cells. Thanks to this, his muscle hypotonia has improved and he is way more agile when moving.
Now to the actual dolphin assisted therapy: On the first day, our very friendly therapist Gerwin and his assistant Nicky approached Jonas very carefully and therefore gained his trust very quickly. The first day of the two-week therapy started with movement exercises to strengthen his abdominal and trunk muscles, which are very important for walking. After thirty minutes, Jonas got a wetsuit and a life jacket, and off we went to the dock. The therapists set a high value to approach our son slowly and carefully to “his female dolphin therapist” THELA. The whole team bonded very quickly, and Jonas was allowed to join Thela in the water with Gerwin. The dolphin started to swim in big circles around Jonas and create an “image” of Jonas with the help of underwater sonar sounds. Thela slowly approached Jonas and it didn’t take long until the first contact with the dolphin. We parents couldn’t help but getting goose bumps for joy. The actual time at the dock with the dolphin was approximately one hour per day. After every session we took a shower with the therapists and changed clothes. After that, the therapists talked with us parents in detail about the experience and the “little achievements”. On dock, swimming with the dolphins and doing exercises alternated. Jonas mainly participated in speech therapy in order to advance his language. As a reward for completing the exercises, Jonas was allowed to go back in the water to his dolphin. All in all, many therapeutic exercises were playfully involved in the programme. Jonas had a lot of fun doing them and didn’t even realise that some “games” include a therapeutic exercise.
What progress was made? From an objective point of view, we can say the following: After one week, Jonas was able to walk 200 meters with Gerwin on one hand without having to take a break. After two weeks, my wife and another affected mother sat by the hotel pool. My wife talked about her dream that Jonas was able to walk. In this exact moment, Jonas is standing by the opposite sun launcher, counts to three in a self-motivating manner and walks his very first steps, alone and unaided, towards my wife. Tears and goose bumps were only a small part of what we felt. And how is our subjective assessment today, after being home again for two weeks? Jonas can walk five steps by himself without any aid. His abdominal and trunk muscles are much stronger, and he doesn’t wobble that much anymore. He is much more focused when talking and makes more effort to communicate what he wants. All in all, he is much more vivid than before and approaches new things with a strengthened self-confidence. From our point of view, we owe these achievements to the dolphin: It takes great courage for a child to go swimming with such a big creature.
On which findings is the dolphin assisted therapy based? Marco, dolphin trainer of CDTC, explained this on one of the very helpful evening workshops: “The sonar sounds of the dolphins create a kind of balance in the left and right hemisphere of handicapped persons (who often show autistic traits as well). Because of that, the children are more concentrated and focused, which also helps them learn new things faster.” Of course, science hasn’t terminally proven all of these findings, but the experiences of many other parents prove demonstrable achievements. As parents, we would also like to face sceptics who might argue that Jonas would have made progress anyway and that probably the different climate and the intensity of the therapy were the actual contribution. We do not wish to contradict that; we only want to describe what we as parents were able to experience during those two weeks. We also want to emphasise that there is no guarantee for possible achievements, but it’s definitely worth giving it a try.
If affected parents feel addressed by what we wrote, feel free to look up the list online which diseases or handicaps are suitable for dolphin assisted therapy. That’s what we did, and PWS can be found in that list.
The costs amount to approximately 10.000 Euro altogether. This covers everything (costs of therapy, flights, accommodation, food). We saved the money and paid for everything ourselves. But there are ways to get funded, e.g. through charity events. dolphin aid can give you advise and financial support if necessary!
Last but not least we would like to thank the whole team of CDTC and the organisation dolphin aid. It’s incredible what you have made possible – along with this goes a big thank you to Kirsten Kuhnert’s tireless dedication! We could feel the love of the whole team every day, and the almost superhuman effort of every therapist when working with other people can’t be topped. Again, a big and cordial thank you. We surely would like to repeat the therapy with Jonas in two to three years, if possible.