London Region    Contact: Helen Glassborow

HAPPY (BELATED) NEW YEAR This is a wee introduction to your new Regional Contact for London – me! My name is Helen Glassborow; I have a husband Martin (who is a behind-the-scenes kinda chap) and together we have a little 3½-year-old girl called Meggie who has arthrogryposis.   A Little Bit About Me Age: mid-thirties mumblemumble. Height: 5'3”ish. Hair: brown. Eyes: blue. Status: full time mother. Up until 4 years ago I was a building surveyor, a busy career woman – how things have changed! Now I find myself juggling Meggie's life and managing the house, whilst trying not to forget Martin and myself – in that order. We've been in Hanwell for 20 months now; before that we lived in Leamington Spa. By the latter part of last year, things seemed to be settling down, so I decided it was time to give something back to TAG: hence the volunteering. A Little Bit About Meggie She was born 6 weeks premature and diagnosed within a couple of days. We became members of TAG shortly afterwards, and attended our very first Conference in September 2001: our daughter was the youngest there! As Meggie has grown up, it has become clear that she has a classic case of amyoplasia – she has thin weak limbs, with turned-in wrists and very weak grip - plus bilateral talipes, for which she had an operation when she was 2. She has just started to stand up, but is not yet walking and needs help with feeding, washing, toiletting (she is still in nappy pants although will use a potty too). The number of gadgets/aids etc seems to increase with every passing year. Currently we have: 2 sets of wrist splints for day & night; foot splints; gaiters; calipers; a “monkey” standing frame; an inflatable bath seat/lift, a walker (which needs more adaptions because her arms are so little). Not to mention bent spoons and foam wedges to help her at mealtimes. We also have an assessment for a wheelchair – alas only a manual one; apparently we have to have a separate appointment for an electric assessment, which we are still waiting for...   Meggie started nursery last September: as well as attending a state-run special needs unit, she goes to a private mainstream one too. And she loves it there, being able to play with other kids. As she is a bright sparky child, we have decided to send her to a local mainstream primary school, and get them to adapt to/for her; our application went in last month, but we won't know until April whether she has a place in our first choice. On the subject of education, we are also currently going through the Statementing process, which is rather stressful. I had to write my parental contribution just before Christmas! Regional Contact stuff I'm sure you've all heard the terrible cliché that a group relies on it's members – but it's true! I think it would be nice to have a meet-up in the spring, but I need your help to make it work, as I have no idea what you folks would like. Any comments/suggestions will be greatly appreciated – even negative feedback is useful. You can contact me about this or any other TAG stuff - e.g. contributions for the next newsletter – at the details on the inside cover.   Soooo. That's enough from me for the time being – over to you...I'd love to hear from all you Londoners out there, even for just a chat! Helen Glassborow Stop Press You may be aware that the first national arthrogryposis clinic was recently established in Birmingham. You probably thought “nice idea, shame about the place”. (I've taken Meggie up there, and it takes a round trip of 2 days and an overnight stay – an absolute nightmare.) Well, our prayers have been answered: another clinic is being set up - this time in the more convenient location of Great Ormond Street Hospital (hurrah!)