Glasgow Meeting 2012
We have all returned from Glasgow back to our various home. Parents and kids came from all over the UK & Ireland to our conference/meeting in the LTCAS offices in Glasgow on Saturday 10th March 2012.
For various reasons it had been a while since our last meeting and I was wondering how many people would turn up. Would it be me and the two doctors who had agreed to speak, Mr Gregor Walker, Glasgow Sick Kids & Dr Tim Bradnock, Edinburgh Sick Kids. At one time I wondered if the doctors would turn up as I was finding it hard to contact them but driving around the Ardnamurchan Peninsula & Isle of Mull the week of the meeting, I was able to confirm the final details, coffee or tea for them. If you have not heard of Ardnamurchan, not surprised as it is a little remote, the lighthouse there marks the most westerly point on the UK mainland.
Saturday morning came and I heard that a number of the families who had booked into the hotel had arrived, so I knew I would not be alone. Went down to breakfast wondering which of the families where the ones attending the meeting. Gradually meeting them Trish, Helen, Jemma, etc getting excited. Time came for me to go next door to LTCAS and set stuff out and wait. The staff at LTCAS had set out the room as asked and cups and glasses all laid out with coffee, teas, etc, even juice which I was told they did not provide were in the kitchen. They had done a great job.
First Gregor & Tim arrived, one relief over and surprise, surprise, the laptop, projector & Powerpoint worked fine so we could have a proper presentation. At 1pm families started to arrive, a trickle at first and then a flood. Had this many said they were coming? Recognising some names other new to me, which was great as that meant that I was either getting dottled or people had heard about us who were not members of the group. I want the group to reach out to new parents, to help them feel they are not alone and these meeting is one way of achieving it.
I started the proceeding with a rousing speech, well I did not see anyone falling asleep during it. The room was hot enough though. Mr Walker started things off proper with a talk on HD, what it was, how it is diagnosed, the types of operations and post operative care. Callum was finding it so interesting that he decided he got the best view by sitting on the window sill with his shoes off and phone in hand. Well he did had 14 years experiencing HD very close up. Others were still coming in and more chairs needed to be brought in. So much for me sitting on my own.
Dr Bradnock took over with a talk on the research that he and Mr Walker are involved in and also Stem Cell research in Liverpool. The first research project is on going. We do have the inital results on our website http://www.hirschsprungs.info/Papers/HDReseach.php . The second research project has the go ahead & they are arranging funding and will be conducted at Glasgow Sick kids.. This into a way of determining whether a HD child has enterocolitis and therefore need admittance. This maybe determined by studying the presence of a certain marker. Very early days but would save children being admitted unnecessarily but more importantly being admitted when maybe they would not of been.
The last topic was the research by Simon Kenny & others into Stem Cell replacement. The first product maybe the re-population of the part of the bowel left behind without ganglion cells. This may improve the outcome of the pullthrough. The next stage will be to try re-populating the entire bowel. This research may of being going on for a number of years but the end product not near. It will not help the current kids but maybe their children.
The doctors have promised us copies of their presentations for us to put up on the net within a few weeks. That is why I have not gone into much detail. There followed a long Q & A which the doctors seemed only too happy to partake in. One question that struck a cord with me was the transition from being under the children's consultant to being under the adult consultants. I think I need to investigate this a little more. If anyone has an experience of this please contact me, I would like to know how it went.
The offices were great, unlimited supplier of coffees, teas etc, snack that people had brought, even the doctors. One of the best parts was watching the kids playing, getting to know each other and looking so well. Another part was seeing the parents talking and getting to know each other. I am sure that Callum gained a lot from seeing Stevie at previous meetings, seeing what another HD kid could do. Now Matthew knows Callum and Matthew hopefully will learn the same from Callum. Well they both now know they have scars as they were comparing them. Seeing parents chatting becoming friends,being able to see and hear of the problems everyone has. Two of the dad's having HD too but more importantly not hiding the fact. What a great mix at the meeting. This to me is the highlight of any successful meeting, parents & the kids talking and playing. When I think back to last year and how ill Matthew was & Callum when I was visiting him in hospital and now look at them.
I worried that booking the rooms until 5.30 would be too long, how would we fill the time? Well it was not too long, time flew and we had to vacate. Those of us staying in the same hotel met up there after dinner, even more than breakfast. Mind two others did go to Jamie Oliver's restaurant, how was it? It was lovely sitting chatting the evening away parents and kids. The numbers gradually reduced due to kids and parents needing bed. It had been a long and tiring day for us all. That is all apart from a certain Matthew who was dancing around his bedroom at 11pm.
We all reconvened at breakfast, saying goodbye but knowing we will all keep in contact. I have seen comments on Facebook saying they have made friends for life. I know from other meetings this is true. This has reinforced in me the knowledge as to how important these meetings are. The talks are good but the friendships that are built up are the sustainable aspect of the meetings.
I would love to be able to organise more meetings in other countries but without help it is not possible. As I would not be able attend them, the group does not have that type of funds, it would be vital that someone in that country would need to take most of the responsibility. Here in the UK we will have another meeting next spring, not sure where but first thoughts are Manchester, Midlands, Bristol, Swansea or Cardiff.
For those of you who came, can't say how much I enjoyed meeting you. For those of you who could not make it, I hope that I will see you at the next meeting. Thank you all for making it a success, that was down to you.
For those who want to know more about Hirschsprung's go to our website at http://www.hirschsprungs.info
Entercolitis - http://www.hirschsprungs.info/Motility/enterocolitis.php