A small step for the world - a big step for Macedonia

Norbert Hodebeck-Stuntebeck

In July 2010 Valentina Kostoska – a mother of a 12 year old girl with PWS – send out an email to IPWSO which read “We need help for our daughter Emanuela with PWS! - and we have no other source to ask than you.” Her health situation had come to a critical point and also her behavioural problems overburdened the family.

Giorgio Fornasier – as the Executive Director of IPWSO – sent an email with the question “Is there someone in Europe who can help this family?  Can you help?” to Norbert Hödebeck-Stuntebeck, Chairman of the Professional Providers and Caregivers Board of IPWSO.

Norbert works for the Diakonische Stiftung Wittekindshof,  an institution in Germany for people with intellectual disabilities with special places for people with PWS (children and adults). When the directors of this institution were informed about the situation they gave a very positive signal for being interested to develop support for the family.

After the first contacts between the family and Norbert, and finding financial support, Emanuela and her parents were invited to stay for a week in the group home for children with PWS in Gronau, a facility of the Diakonische Stiftung Wittekindshof in Germany.

The idea of this first week was like a “test” - to find out:

- if it could be helpful for Emanuela to stay for a longer time (half a year) in the group home

- if the family gets the feeling that it could be helpful for Emanuela and

- if it could be acceptable for the family (Emanuela had never been without her mother before)

- if the others with PWS in the group home could accept the situation

- and how it would work with the language barrier (Emanuela didn´t speak any German at this time)  

In November 2010 Emanuela, her mother and Deci  – an engaged medicine student, and friend of the family in Macedonia – stayed for a week in Gronau. Emanuela in the group home, her mother and Deci in a hotel in the city. During this week Emanuela had some very positive experiences in the group and participated in the school. Her mother and Deci used the time for to learn more about the syndrome from both the staff of the residential home and Norbert, mostly about behaviour management, nutrition management and all-day care.

At the end of the week there was a meeting with all participants (Emanuela, mother, staff, leader of Gronau, Norbert) to decide what can be the next step. All agreed that the week was very successful and also Emanuela was interested to come back. So the decision was:

1. Emauela should come for 6 months to the group home with the main goals of a positive development of her health situation and her social behaviour.
2. There must be a development of a support system in Macedonia, so that after the 6 month the support for Emanuela carries on and also for other people with PWS in Macedonia.

And so, the idea of a PWS Network in Macedonia was born!

The main question after this decision was: how to find the money for the 6 month treatment in the group home in Germany. And how to develop a PWS network in Macedonia.

Six month later there was success with the funding;  50% of the needed money came from the health system of Macedonia and the other 50% were given by the Diakonische Stiftung Wittekindshof as a sponsoring of this project. So there could be the offer to Emanuela to come to Gronau in June 2011 for 6 month.

During the time after her first stay in Gronau (November 2010) up to June 2011, when Emanuela was back with her family, two very positive things happened:

-          Emanuela lost nearly 10 kg and

-          her behaviour problems decreased.

-         

The explanation for this by the family was that they tried to work in the way they had been taught by the staff at the group home in Gronau. This development gave everyone the confidence that the project would be successful.

During the time from June 2011 to December 2011 when Emanuela stayed in Gronau, the family visited her twice and were in phone contact sometimes every week.

Once a week or when necessary, there was a translator so that Emanuela or the staff could explain things Emanuela seemed not to understand.  But it was really interesting how fast she started to understand the routines, the schedules and the language. At the end she was able to speak the most common things in German and understand most of the things people told her

.

Other important results of the 6 month are:

–        the positive development of her social behaviour

–        the increased acceptance of her role in everyday life (in the group home and in school)

–        the decreasing of behaviour problems (crisis situations)

–        her competence and knowledge about nutrition (“What can I eat, what not”)

–        and she lost another 10kg during this time

At the end Emanuela was asked if she wanted to stay longer in the group home in Gronau or to go home and her answer was very clear: “I want to go home  -  but I like you too”.

Also the professionals who took care of her over the six month made the same decision: “she learned so much and now it is time to go back into the family and implement these new things there – because in Macedonia is her family and her future”.

At the same time Emanuela was in Gronau the activities to build up a PWS network in Macedonia were going on. Norbert come in contact with Dr. Elena Shukerova-Angelova (Pediatrican and Endocrinologist)  and Dr. Aleksandar Sajkovski (Pediatrican and President of the Pediatric Association of Macedonia). Together they developed the first step, a lecture by  Norbert about the main characteristics of PWS during the Pediatric congress of Macedonia in October 2011 in Ohrid.

This gave an opportunity to  more than 600 pediatricians all over Macedonia to learn about this rare disorder and discuss the concept of having a first conference solely for PWS in Macedonia.

30 November 2011

IPWSO is so proud to have people like Norbert, and institutions like the Diakonische Stiftung Wittekindshof who able to carry out such great international cooperation between families and organisations worldwide on behalf of people in the world who have Prader-Willi Syndrome.