As every year we met again at the Hotel Principe Torremolinos to hold a new meeting of young PKU. On this occasion the dates chosen were between 23 and 30 June.
The program did not differ much from previous years, which is one of the pending issues. We believe that we must include new features because we run the risk of running out the idea.
One of the challenges we set last year was to attract several new kids, and we succeeded. This motivates us because it is important to have a generational continuum. The more new participants, the more alive the encounter will be, since those who have taken part once tend to come again if they can. The meeting began on Saturday 23. Participants were arriving all along the day so naturally, we had no meeting scheduled for that day.
The program started out on Sunday 24. At 10:30 in the morning was the presentation, in which Jose Maria Campayo (youth representative), Ana Cera and Isabel García told us how the meeting would be developed. Also formed three groups for cooking workshops in order to make them practical and usefull.
In the afternoon the groups 1 (17:30) and 2 (19:00) attended toa cooking workshop. They made a great marinade eggplant. We all had them for dinner later in the dining room. After cooking they met around a table to get the nutritional value of the recipe (phenylalanine proteins and carbohydrates). Almost everyone already knew how, and who didn´t learn it fast enough.
On Monday 25 we had the first issue to be solved. In the afternoon Dr Maria Bueno from the Hospital Virgen del Rocio (Seville) was supposed to give us a lecture entitled “Current treatments for PKU and OTM”, but she couldn´t attend. This was a headache, because we did not want to give an afternoon off (we had already scheduled a free afternoon and a trip) so we opted for further workshops. Meanwhile the organizers met to prepare some alternative activity. Pointed this handicap, the day’s program turned out to be as folows : at 10:00 the third group undertook the first workshop, at 12:00 Group 1 prepared the second recipe (cauliflower to the bechamel) group 2 at 17:30 made the second recipe and group 3 made it at 19:00.
On Tuesday 26 we had the same problem, Dr. Manuel Perez Perez from the Hospital Virgen del Rocio (Seville), could not come but this time we had prepared alternative activity because we already knew that possibility from the day before. At 10:30 we all met and played the Smartest PKU contest. Two teams were formed.
Each responded fifteen questions with three possible answers of which only one was true. A spokesman was named in each team to respond by the group after taking ten seconds to think about together. The team that hits more questions would go to the next round and the other would be eliminated. The next round was the 12 individual competicón classified by direct questioning in search of a spot in the quarterfinals. The next round was the 12 individual competicón classified by direct questioning in search of a spot in the quarterfinals. Already in the quarter finals were two that would survive to the semifinals. The questions increased in difficulty as the rounds passed. The grand finale consisted of five questions and two contestants. These were the most difficult questions, and even had two trick questions. At the end Elena Merayo proved to be the smartest PKU.
In the afternoon we returned to the routine of the workshops. Group 1 (17:00) and group 2 (1900) prepared the third recipe, pineapple cake. At this point in the meeting, their skills in the kitchen and making numbers was more than evident, so this workshop was by far the easier it was for them.
On Wednesday 27 at 10:30 we meet to develop a debate, it was performed divided into two groups, veterans and rookies. In both groups after a brief formal introduction of PKU, the kids were free to speak and ask what they wanted. In the afternoon (17:30) Group 3 undertook the workshop that still lay ahead. The rest of us had the afternoon off.
On Thursday 28 at 10:30 we met for a workshop a bit special. Starting from an hypothesis unlikely but not impossible. Wich was to imagine that they were going out for the weekend with their friends and had forgotten the special products. They should be able not to exceed their tolerance phenylalanine diet food prepared “normal” based. They did this all well, but less tolerant of those who went to more effort which cost them. It is surprising to realize that nearly half of the participants do not know their tolerance.
In the afternoon we had a meeting to elect the next representative because José Maria Campayo leaves the position that he has taken over the last three years. As a result of this meeting Isabel García y Ana Cera are the new representatives along with Iratí Mestraitua who agrees to help as she can. The three of them have been helping the representative the last two years, which seems the perfect formation.
On Friday we went to the “Aquapark of Torremolinos”, it was very fun and they really enjoyed it. After returning to the hotel we proceeded to distribute to return to complete the questionnaire evaluation of the meeting.
THESE WERE THE RESULTS
Perfect date for meeting: June
Organization of the encounter: 7,52
Participation: 6,95
Punctuality: 7,23
Dining:
– Variety: 7
– Quality: 8,14
– Schedule: 9,71
Cooking workshops:
– Organization: 7,24
– Schedule: 9,14
– Participation: 6,95
– Chosen Recipes: 7,14
Meeting schedules: 8,28
Working and behavior monitors: 8,14
Smartest PKU Contest: 8,14
2 days Diet: 7,61
Coexistence of group: 7,9
Would you return next year? :
– Yes: 100%
– No: 0%
Do you want to change hotels and city for next year?
– Yes: 7%
– No: 93%
These scores might sweeten reality. It is true that they like the format and that they enjoy it and they learn, but it is fair to say that we all are friends, so that we scored slightly above than what is actually perceived. We must be self-critical and know that it is desirable to and know that it is desirable to continue improving. We should not think that we do it perfectly because there’s always room for improvement and we have not yet reached the perfect meeting.
Thank you very much to you, Jose Mari, for driving us these years with your best effort. The one who does what he can is not forced over. We will not forget you ever. Thank you very much also to the hotel staff for facilitating the work. After fourteen years there, we felt like at home. And finally, thank you very much to our monitors Estibaliz and Isabel both for being always involved and being so helpful in everythingat. You are the best imaginable Monitors.
Mike Vidal
