Twelve Days of Christmas

On the first day of Christmas,
my daughter said to me,
"Just when are we putting up the tree?"

On the second day of Christmas,
my daughter said to me,
"I need some cash,
and when are we putting up the tree?"

On the third day of Christmas,
my daughter said to me,
"You won't be on my list,
I need some cash -
and when are we putting up the tree?"

On the fourth day of Christmas,
my daughter said to me,
"Take me to the shops,
or you won't be on my list,
I need some cash -
and when are we putting up the tree?"

On the fifth day of Christmas,
my daughter said to me,
"What can I do......
take me to the shops,
you won't be on my list,
I need some cash -
and when are we putting up the tree?"

On the sixth day of Christmas,
my daughter said to me,
"I hope we have some turkey,
but what can I do.....
take me to the shops,
you won't be on my list,
I need some cash -
and when are we putting up the tree?"

On the seventh day of Christmas,
my daughter said to me,
"I also want some pudding,
I hope we have some turkey,
but what can I do.....
Take me to the shops,
you won't be on my list,
I  need some cash -
and when are we putting up the tree?"

On the eighth day of Christmas,
my daughter said to me,
"There'd better be some icecream,
I also want some pudding,
I hope we have some turkey,
but what will I do.....
take me to the shops,
you won't be on my list,
I need some cash -
and when are we putting up the tree?"

On the ninth day of Christmas,
my daughter said to me,
"I hope we're having jelly,
There'd better be some icecream
I also want some pudding,
We'd better have some turkey,
but what will I do......
take me to the shops,
you won't be on my list,
I  need some cash -
and when are we putting up the tree?"

On the tenth day of Christmas,
my daughter said to me,
"Why are you tired,
You'd better get some jelly,
There'd better be some icecream,
I also want some pudding,
We must be having turkey,
but what will I do.....
Take me to the shops,
you won't be on my list,
I  need some cash -
and when are we putting up the tree?"

On the eleventh day of Christmas,
my daughter said to me,
"Mum, you can't lie down,
Why are you so tired,
You'd better get some jelly,
There'd better be some icecream,
I also want some pudding,
We must be having turkey,
but what will I do......
Take me to the shops,
you won't be on my list,
I  need some cash -
and when are we putting up the tree?"

On the twelfth day of Christmas,
my daughter said to me,
"What is Santa bringing,
Mum you can't lie down,
Why are you so tired,
You'd better get some jelly,
There'd better be some icecream,
I also want some pudding,
We must be having turkey,
but what will I do......
Take me to the shops,
you won't be on my list,
I need some cash -
and WHEN ARE WE PUTTING UP THE TREE?"

“If you fight for your dream, one day, the dream will fight for you, too….”

Dorica Dan

NoRo - The story of a project

This is the story of one mother's fortitude and strength that literally took her around the world and ended with her establishing not only the wonderful partnership between Romania, her country, and Norway, but also her strongly commited work with EURODIS.

Dorica is also on the board of directors of IPWSO.  Her commitment through her daughter is not only extremely courageous, but an example for us all...

It’s interesting to tell the story of a project that is very close connected to your own life project… It is certain that our approach to others is more because of sharing the same thoughts and less about the way of living. We make ​​friends not because we all necessarily meet  on the same intellectual level,  but because they responded positively to a set of questions considered relevant to follow up a friendship. We did not even ask if they want to be our friends. We talked with them, we met, we shared the pain and joy, and so we tied our lives together.

It was the same when we got to the conclusion that we could really do this, here with this center in Zalau with the support of the Norwegian partners. Not because of some theoretical principles, not because someone or some institution has declared their support, but because this project created the same enthusiasm and belief in us and in partners. To believe in something does not mean you always are convinced by an amount of information, and sometimes I'd say that we even ignore part of the information to keep the dream alive…

Only if you follow your dream, can you reach it!

It is a very interesting feeling to analyze how it happened and which facts concurred to the achievements you had in your life. As a person that never believed in having any kind of “leadership” skills, I think that now I am doing a pretty good job for the team that we have created in this project…

But, let’s start with the beginning!

My daughter was diagnosed with Prader Willi Syndrome when she was almost 18 years old and we wanted that nobody else to face an unknown diagnose any more. As a result of the struggling to find information about the diagnosis and to trace other families having member with this diagnose I created the Romanian Prader Willi Association – RPWA in May 2003.

In 2004 I attended my first international conference on Prader Willi Syndrome in New Zealand. It was a “life” experience, going at the end of the world to learn how to cope with my daughter’s disorder! It was my first trip by plane, and my first contact with parents from all over the world facing the same problem as I do.

It was not easy getting there. First it was a matter of money was solved by a grant that I received through the German Association for PWS. Then, when this problem was solved, I realized that I needed a visa from London, as we had no Embassy in our country… and to get this visa, I needed a visa for England, too. Very complicated. I couldn’t solve it without a good friend in Cambridge that helped me make this dream a reality. The travel was not easy at all, as I went by car to Frankfurt, slept in the car and the next evening I took the plane for more than 30 hours.  It was a real adventure…        

  

In New Zealand I met wonderful people that helped me think that I could really do the mission that I wanted so badly to do for Romanian patients. I met Ragnhild Arnesen from the Prader Willi Association Norway, I met Pam Eisen the President of the International Prader-Willi Syndrome Organization (IPWSO) and found out that Pam’s father was born in Felsőbánya - Baia Sprie (which I believed was in Hungary and then I realized that it was in fact in Romania and very close to my town).

I made friends and I was looking forward to meet them again at the next conference in Germany. Also, I had the opportunity to be in a workshop chaired by a special person, Christian Aashamar from Frambu – Resource Centre for Rare Disorders, Norway. His presentation about Frambu kept my attention and remained as a dream for me because it seemed something impossible to be done in our reality.

                Nothing happens in your life by mistake.

Things began to develop rapidly. The German Association decided not to host the following conference and in a “crazy” moment I decided that we can do it… and we did it in 2007! The conference included 388 participants from 38 countries, including Norway and we managed to organize the arrangements to everybody’s satisfaction! As from that moment we were more self-confident in our organizational capacity. Also, in the same year we had established the Romanian National Alliance for Rare Diseases, we started to work for the National Plan for Rare Diseases and organized 2 conferences for rare diseases. I would say that it was the major step forward for our organization.

In the same year I was elected in the board of IPWSO and EURORDIS (The Organization Rare Diseases Europe).

In 2008, a call for proposals from Norway Grants was opened and I remembered the presentation about Frambu from New Zealand (sometimes you keep something in your heart and you don’t even realize that it is still there) and I decided to try. I approached PWA Norway and asked for partnership for the seed money project and they agreed  to prepare the project and to ask Frambu for partnership.

                Everything became possible because of two mothers, one from Norway and one from Romania that have met once in New Zealand… and when we lose our strength we are carried by hope…

We prepared a partnership agreement and a presentation of the project and met at Frambu in November 2008. At that time, all the information on Frambu’s website was in Norwegian, so I based my application on the memories and my own dream. To be honest, I’ve been most impressed by the way Frambu approaches the entire family and community to improve the quality of life for the person affected by rare diseases. This is why the RPWA’s vision was the “Norwegian reality” so …I don’t know why and when we convinced them to be our partners (after the first day, I told to Dr. Puiu that they probably will not accept our offer…), but, I assume there were some important elements that caught their attention: Ragnhild Arnesen from PWA Norway, the vision and my belief that we can do it in a very different reality as Romania. The director of Frambu saw this and signed the agreement the next day.

We wrote the project and we won it!

The implementation of the project was not easy as we wanted to achieve as much as possible for a better future for patients with rare diseases in Romania. The expertise of our partners was essential – the team and volunteers involved (Lisen, Tove, David, Kaja, Ragnhild, David Oziel, Christel, Anja, Nina, Rob, Romanian professionals and patients involved in the National Committee for Rare Diseases) were outstanding and the entire support from additional partners and friends helped us to do a good project.

As a result,  a day care center for children with rare diseases from autistic spectrum disorder has been established where they are provided with educational activities and different therapies (behavior, sensorial, physical therapy, massage, electro therapy, speech therapy, hydro therapy, weight management and recreational activities). Also provided is counseling and support groups for parents. The beneficiaries in the day care center will come mainly from our town. We can also organize training sessions for families (and professionals) from other towns for a certain period of time in order to provide them with the knowledge on this area.

Secondly, is the training part of the center, taken from the Frambu model in Norway.  This is a residential programme designed for 12 placements at a time.                  The experience of our partners was essential in our project!

• Groups of patients from all over the country will attend training activities for 5 days, learning how to cope with their diseases and disabilities;
• Groups of young adults with rare diseases (trial for flight) will come for consecutive weekends for training in “life skills”;
• Families with newly diagnosed children can also come to the center for a period time for assessment and training of the family;

If you want to know more about how this project works and the model we have used, please click here... NoRo Partnership programme

 

Eating our way through the holidays...

So... we are coming up to Christmas, or Hanukka, or just holiday time, and our kids are either off school for weeks, or coming home for the holidays and we experience that panicky feeling of "how can I make this go right!" 

Janalee Heinemann has written some great Holiday Tips which I thought deserved repeating here...  In fact, I would go so far as to suggest you print this out and hand it to all members of the family well in advance.

The holidays are typically a food fest in many countries – and can be a time of stress for our PWS families.  With good planning, it is possible to make it a happy holiday for all. 

Christmas, Hanukkah, Lunar New Year, etc.  

·        If you will be with relatives, carefully plan ahead of time and communicate the importance of food control with all involved. Make sure all attending know the “rules of engagement” and agree to cooperate.

·        See that someone at all times is clearly in charge of your child with PWS.  Clearly define when you are “changing guards”.  As Dr Linda Gourash states, “When everyone is in charge – no one is in charge.”  

·        If your child is old enough, rehearse the “rules” before the special  day and come to a mutual agreement on what your child will be allowed to eat.  You can barter, i.e. “Do you want a little extra turkey and dressing, or do you want a piece of pie as your special treat?”

·        It is okay to request that Grandma and other relatives tuck away tempting items during your visit and to discreetly check with you prior to offering your child a treat. 

·        Make sure you know what everyone is bringing, so there are no surprises on what the choices will be. 

·        Grandpa and Grandma, or aunt and uncle may want to bring a special gift toy to compensate for the food they have to deny your child. 

·        Go over with the hostess or your family on how to contain the accessibility of food.  See to it that where your child is sitting there will not be a lot of bowls of food, rolls, or condiments nearby (many people do not consider how many calories our children can consume with the extras – sugar, butter, catsup, etc.) 

·        After eating, when people are just visiting, see to it that if the food cannot all be put away, someone is responsible for guarding it. 

·        Your child must have the security of knowing you will be strong in your commitment to keep them protected from food – in spite of themselves.  Giving in, even once, means several battles ahead.  I know you get tired of hearing it, but consistency is the key. 

Of course, each family must judge their own situation based on their child’s food drive and their own regulations on treats.  Some families are raising their children to never have any sweets – no exceptions.  Others (like ours) just go by calories and the weight of the child, trying to keep the diet less in quantity yet similar to others in variety.  Often, the most important thing is to prevent food sneaking or food demands.   There is a large variance in the food drive of children with PWS.  Some will ask or beg for more food, but make no significant attempts to sneak food.  On the other hand, some will go to great extremes to get food, and are incredibly clever at doing so. 

HOLIDAY WARNING        

The holidays have an extra risk factor for our older children and adults with PWS.  In the USA, four individuals with PWS were reported to have died of gastric rupture and necrosis. Furthermore, 4 additional individuals were suspected to have gastric dilatation and perforation, but without autopsy evidence. Some of these were over the holidays or special events and due to a food bingeing episode that led to necrosis (deadening of the tissue) of the stomach wall and a perforation (tear) in the stomach.  In most of the deaths, the person with PWS was relatively slim, so there was no great concern about weight gain.  Keep in mind that a person with PWS who is slim still does not have total food control.  When one also has many opportunities for food ingestion, the lack of feeling full, the high pain threshold, and a weak vomiting reflex – then one has the potential of filling the stomach dangerously full.  Because there are many food bingeing episodes of our children and adults with PWS, most not having such disastrous results, we think there are probably other factors that play into this life-threatening situation that we are currently researching.  One hypothesis is that due to prior food binges, and stomach muscle weakness, certain areas of the stomach wall become thinner putting this area at risk.  

Please see that this holiday season, the safety and security that your child deserves is provided.