Sunday, September 9, 2012

In August, what happened was....


All around the world there are families needing our support.  Emails come in continuously - not always with cries for help, but quite often, so I'm going to outline some of the issues we helped with internationally in August.   For instance...

Qatar: A mother with an 11 year old son from Doha contacted us asking for support in maintaining her son’s dietary needs and physical activities.  While her son had been diagnosed at birth, he was unable to have GHT due to a sleep apnoea problem. This mother was asking for information about any centres run specifically for PWS where her son could get some help.  Our office in Italy sent all the relevant packets of information, both in Arabic and in English, including DVDs.  Of course, even though we are a big family of many countries (98 to date), there is not always immediate help at hand, so it was with some hope that we contacted Germany and asked our professionals there at the Witteskindhof centre  whether they might be able to help.

You may remember reading our blog  which told of a young woman with PWS from Macedonia who came to stay for a few weeks at Witteskindhof centre with her family.  While she was able to integrate socially and make new friends, at the same time both she and her family learned more about PWS and what kind of support is needed around this syndrome.

Not long after our Qatar request, we were rewarded with an answer outlining the conditions for acceptance.  We have passed this onto our contact in Doha and are hopeful that an excellent outcome will be reached.

Philippines: Not long after this, our CE, Giorgio Fornasier, had a visit from our parent delegate in the Philippines who has been a very active member in our large group.  Currently she is working for a Dutch company and travelling to the Netherlands every few months.  She was immediately put in contact with Dr Leopold Curfs there, and so another strong strand of information, support and help has been forged.

China: An enquiry from China – and, wonderfully, we have Chinese translated information that was able to be posted out immediately, and our parent contact in China alerted to this new family.

Mexico:  In Mexico, a very successful weekend workshop on PWS was held with topics covering paediatrics, growth hormone, behaviour and so on.  Our Scientific Consultant, Dr Moris Angulo from the USA, was one of their major speakers.  Mexico is making very good progress, especially with such expert help!

Peru:  It was sad to receive an email from Peru from a mother who had lost her 3 year old daughter who had PWS, and who was scared to become pregnant again, not knowing the risks involved of carrying a second child with PWS.  We have good Spanish-speaking medical contacts who were able to talk to this mother in her own language.

Chile: We welcomed a new Parent Delegate from Chile, Amarlia Barlart, who speaks excellent English as well, and who is eager to help families in her country.

New Zealand: We welcomed a new Caregiver Delegate from New Zealand, Julie-Anne Quinney and look forward to meeting her at the 8th International PWS Conference next year.

Our Professional Providers Board:  Talking about our professional caregivers, they have e-office hours where you can contact them and talk through any issues or problems, or just talk about PWS with another country – it’s a great resource and we hope to build up quite a talk-fest.  You can find information on our website under the “Carers” tab.  During their last month's office hours, they spoke with caregivers from USA and Spain.  You don't even have to have a problem to talk!  They just love to know you're 'out there'!

Fundraising:  Finally – we are still struggling to revive our grant from Pfizer which allows us to do our daily work.  We know it is difficult to find funding for everyone all around the world, but we hope we will never be in a position to close our doors!  You can help, of course – our “Light a Candle” project is still alive and well, and we received a donation just the other day; our “e-gallery” project where you can buy wonderful and unusual art-work for a small donation, is still waiting for you!

Membership dues: And, if we receive all our membership dues, this will also help us in our work.  Outstanding dues still remain from:

Greece
Poland
Venezuela

Don’t forget, you need to be a fully subscribed member country in order to have a vote at the General Assembly next year where we look forward to another wonderful conference, full of more wonderful people!  (Well, we are, aren't we?)






Sunday, September 2, 2012

Men & Grief

While we've been on the topic of grief recently, I was reminded of an article about men and grief that  I once asked for to go into our newsletter many years ago now.  I wanted to know why some fathers grieved differently from mothers and why men grieved differently from women.  Bear in mind this was a while ago, and I'm quite sure that, generationally, things have shifted significantly.  But if they haven't, for you, then maybe this might help.  You will also notice that in this story diagnosis had been late, as it still can be in many countries and there was no help with feeding.  This family really struggled.

"I had been looking forward to the birth of our first child. For months I had been fascinated by her movements insider her mother; at the beginning little flutterings and then as the months passed, stronger, more vigorous movements. It was exactly what one would expect of a strong, healthy baby.
I was present at my daughter's birth, an experience that defied words All stories and all films that had the birth of a child in them made much of the initial birth cry. I was absolutely unprepared for our experience: she arrived without a sound. I have a clear picture of the doctor holding her up, her little mouth shaped like a cry — but there was no sound. I am unable to describe what came over me at that moment — words like shock, disbelief, do not even hint at what I felt.
My overriding reaction was what I can only call resignation; whatever would be would be and I had no power whatever to change any of it. I was devoid of feeling. That stayed with me for moths. The only thing that broke through my lack of emotion in those early days was a kind of subdued elation when our little girl would actually swallow milk from an eye-dropper which was the only way we could feed her. Eventually our efforts weren't enough and she had to be tube fed at hospital.
At work I was an automaton. I have little recall as to whether I was happy or sad, warm or cold; I had no appetite. I used to enjoy a drink. I never tasted the stuff from this time for months afterwards!
As the hospital testing continued to determine what the condition might be, I became aware how differently my partner was responding. She saw all tests as a challenge. I was indifferent to the various tests and as each eliminated this or that possibility she saw all these as major victories. The diagnosis at this stage was benign hypotonia.
I was conscious that I was unsupportive. My partner's hopes were constantly undermined by my scepticism, actively negative and yet, I could not break out of the "what will be, will be" mindset. While my wife wanted to talk about progress and development and testing, I just wanted to be left to myself. I had closed off — little outside myself held any interest. I "escaped" into Wilber Smith.
A friend was a good listener, but I could only share at a superficial level. Talking was not helping as the overriding feature of "all this talk will not change anything" undermined any chance of healing.
The second stage was marked by my waking one day and noticing the sun was shining. I felt warm for the first time in months. This time pin-pointed another stage: anger. Wild mood swings, optimism (that our little girl would be "normal," that she would outgrow this strange condition) followed by depression caused by the uncertainty of what the condition would mean long term. I cried more now — most nights. Sleep was full of curious dreams and I would wake up exhausted. But there was less of "what will be, will be." By now our little girl was drawing me more and more into her life. I felt I was able to share more of my partner's hopes. The future seemed much less fixed.
Eventually our daughter's strange condition was diagnosed as PWS. It took me a long time to accept this. I read all I could about this syndrome — the information coming from my partner's research; a book here, a paper there, an article somewhere else. After a time I noticed a shift in what I was feeling. The crippling resignation had given way to a hope that what was now, did not have to be in the future. My wife was already planning counter measures for our daughter to run against the classic symptoms — extra help for learning, exercises to firm up the little muscles, games to keep her stimulated.
Sometimes it seems a long time ago; more often it feels like yesterday. A kind of emotional evenness came when she was five and a wholeness at seven. The anniversary is still hard, but my partner eases me through it each year.
Yes, we men do cope with grief differently. Education should enable us to cope better."