Laurence Moon Bardet Biedl Society
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LMBBS Laurence Moon Bardet Biedl Society |
For general enquiries and conference information please contact Chris Humphries on (01633) 718415 or by e-mail at: chris.humphreys4@ntlworld.com
For newsletters, leaflets, tape or disk requests please contact Tonia Hymers by e-mail at toniahymers@btinternet.com. Alternatively telephone your request to Chris Humphries and she will pass the details on.
For fundraising information or to join the Friends of the LMBBS please contact Anne Crotty on (01255) 507977 or by e-mail at anne_and_terry@yahoo.co.uk
The LMBBS web address is www.lmbbs.org.uk . All of the above contact details are posted on our web site.
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared this unique experience to understand it, to imagine how it would feel. It’s like this.
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans…the Coliseum…the Michelangelo…David…the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says “Welcome to Holland.”
“Holland!!?” you say. “What do you mean Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. And you begin to notice that Holland has windmills and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things – about Holland
© 1987 Emily Perl Kingsley All rights reserved
Spring has officially sprung and to mark the season I thought ‘Welcome to Holland’ was wonderfully appropriate. It captures perfectly the emotions and feelings experienced during diagnosis and the early years of adjustment. However, I believe the pain does ease with time, because you adjust to being in ‘Holland’ and can’t imagine being anywhere else. Soon enough our babies become little people and young adults and pursue their independence. Our role is then one of support as they face the many challenges of living with a disability. Of course this is simply one parent’s perspective and I would love to hear your thoughts and comments.
We have just come back from the Annual Family Conference and once again have had a wonderful weekend. Through talking to young adults who have LMBBS and listening to the dedicated professionals, I feel there is a great deal of hope for our children’s future. A small report follows; the full Conference Report is due out in the summer.
As well as the usual items, there are personal perspectives from two very inspiring young women. Jackie Farrington and Lucy Jaques are both determined to achieve despite their disabilities and provide excellent role models for our younger members with LMBBS.
As I mentioned earlier, the Conference Report will be sent out in the summer and I will be putting the next newsletter together in the autumn. I have an article from Julian Thomas about his wonderful holidays and would love to hear from anyone else who would like to contribute. If you have any comments regarding this newsletter or the items featured, don’t forget the letters page, it is your means of staying in touch and airing your views. I also need any favourite healthy recipes or diet tips.
I look forward to hearing from you soon and wish you a healthy, happy summer.
Tonia
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During a recent committee meeting, it was decided that the time was right to have a President of the Society and, without exception, every committee member proposed Dr Phil Beales. Phil Humphreys, Chairman of the LMBBS approached Dr Beales and asked if he would be prepared to take on the role of President and the committee were delighted when he accepted. Speaking at the Conference in April, Phil Humphreys said ‘This title is long overdue. Without Dr Beales and of course his team, I am sure you will agree that our Society would not be where it is today and for this we thank him most sincerely.’ Phil presented Dr Beales with a new delegate’s badge with ‘President’ printed after his name.
Unlike previous years, when the sun has always shone in Northampton, the weekend of the LMBBS Family Conference 2005 started with snow, hail and rain. However, Saturday dawned dry and bright, if a little cold and the children went off happily on their day out at Drayton Manor Park.
On the Saturday evening, the children had several activities to choose from; swimming, a movie show and several craft activities so all ages were catered for. There were also two raffles; one for children and one for the adults and nearly £200 was raised.
This year saw an excellent range of speakers and as always, Chris Humphreys, Conference Organizer, managed to balance the technical with the personal. The staff at the Hilton once again took great care of us, despite it being an extremely busy weekend and overall the feedback was very positive.
My name is Jackie Farrington; I was born in 1967 and live with my dad and stepmother in a small town called Middlewich in Cheshire.
I was diagnosed with LMBBS at the late age of 25 years. I was falling over on a regular basis in dark or dim light and so went to the optician who referred me to my GP. He referred me to the local hospital, which had a retina specialist, but after 6 months they still hadn’t made a diagnosis. I finally got a referral to Manchester Eye Hospital where I saw a nice young consultant who did a detailed examination. He said he would take pictures of the eyes and toes and do further tests but he had a fair idea of what the outcome was and after the results, I was diagnosed with LMBBS.
I was relieved to have a diagnosis, however it caused other problems such as my career as a nursery nurse. I had to give it up which was quite upsetting. After getting over it, I decided to go back to college. I started by having a go at Access to HE, but failed miserably so I decided to do an NVQ in IT and received my certificate for both levels 2 & 3 and a part certificate for NVQ level 2 admin.
At present I am doing voluntary work for the local Citizens Advice Bureau, three days a week as a receptionist, which I really enjoy. Other voluntary work I am involved in is the Middlewich Community and Youth Project. I have been involved with the project for 20 years and started as a member of the senior youth club. I moved on to become a Young Leader, which meant I worked voluntarily in the junior youth club and went on weekend training. Young Leader training took two years. I then did some paid youth work for our unemployment afternoon club until we ran out of funding. I went back to voluntary work in both clubs and have supervised young people from the age of 7 to 19 years, covering a whole range of sports and issue based work, which includes discussions with members of the senior youth club. I have also been a member of the projects management committee for 18 years and have held the post of Secretary twice and have also been Fundraising Co-ordinator. I am presently holding the post of Secretary but will be resigning at the AGM as I wish to free up my time ready for a new challenge.
I must say that in recent years my health has worsened. Three years ago, I was diagnosed with type 2 diabetes and have problems off and on with it. The tablets, after 2 years, stopped working and I was put on insulin injections, which is a lot easier but still has its problems. I have had a slight kidney scare and at present my eye sight has gone worse to the point where there is hardly any sight remaining in the left eye and very little in the right eye. I have central vision and as my eyesight gradually gets worse it is an increasing concern for me.
I am undergoing electrolysis treatment to remove my facial hair, which is coming on extremely well, however I have problems with my hormones making me very moody and tearful. I am taking anti-depressants but I am becoming tired and restless during the day and am having trouble sleeping at night. However, I try not to let it get me down too much.
In the spare time that I have I socialise with my friends, go to the local vision resource centre, ‘IRIS’, listen to the radio and listen to talking books. My favourite authors are James Patterson, Ian Rankin and Tom Clancy. I also like listening to all types of music.
Last but not least, I have what I think is the most important thing of all, and that is a sense of humour.
‘One of the biggest single advances in teaching visually impaired learners ever achieved’
A unique combination of sound and touch is bringing a whole new world of teaching opportunities into both special needs and mainstream education. The T3 talking tactile technology is a multi sensory device developed by the Royal National College for the Blind (UK) and Touch Graphics of New York.
A unique combination of sound and touch is bringing a whole new world of teaching opportunities into both special needs and mainstream education. The T3 talking tactile technology is a multi sensory device developed by the Royal National College for the Blind (UK) and Touch Graphics of New York.
The T3 is a laptop sized, touch sensitive device, which is connected to a standard computer and co-ordinates audio and haptic sensations and allows the visually impaired learner access to maps, charts, diagrams and text. When various symbols, icons and regions of the tactile surface are pressed, audio information on what the user is feeling comes from a connected computer.
“T3 gives total access to any learning programme for the blind or visually impaired learner” says Lesley Wells, T3 Project Manager.
Ian Beverley, Braille Technology trainer at RNC, the UK’s leading college for people with sight loss said “I would describe it as sensational, as it allows the visually impaired student to access learning resources with senses other than vision i.e. by touch and by sound… …A big thumbs up from me.”
The major benefit of the T3 is that it makes accessibility easier for the visually impaired student, automatically putting them in control of their own learning. To find out more, visit www.talktab.org
The Royal National College for the Blind has been confirmed as number one of its kind in the country after receiving a glowing testimonial from education watchdogs Ofsted and ALI, describing RNC as an “Outstanding college providing high quality education and training where students’ individual needs are very well met”.
The Principal, Roisin Burge, commented: “I am delighted that the commitment to the students and enthusiasm of the College staff has been recognised and rewarded in such complimentary terms…”
The government inspectors said that the College demonstrated an “…exceptional culture of placing the needs of students at the centre of planning and of all the College’s activities and developments…”
The three areas the inspectors feel RNC needs to focus on however, are teaching accommodation for some curriculum areas, the use of additional resources in some teaching sessions and access to external work placement for some students.
All Ofsted reports, including that of RNC, can be found on www.ofsted.gov.uk
Extant Theatre, the only UK blind theatre company, have been touring with their highly acclaimed new play Resistance.
Resistance tells the extraordinary true story of Jacques Lusseyran, a blind, teenage member of the French resistance movement in occupied Paris during World War 2.
Adapted for the stage by blind writer Maria Oshodi, Resistance uses physical theatre, experimental dance and live audio description (included within the script; no audience members have to wear headphones). Resistance is performed by 6 professional blind and visually impaired actors.
For more information about Resistance or Extant Theatre, go to their web site at www.extant.org.uk
If any readers have been to a performance by Extant Theatre, I would love to hear from you. (Ed)
There is ‘Good News’ and ‘Bad News’. The ‘Bad News’ is that my attempts at securing a grant towards the work of the Society have been unsuccessful so far, so we obviously can’t rely on this as our primary source of income. We mustn’t forget that our Society is maintained entirely by Grants, Donations, Fundraising and the help of the ‘Friends’, thus our fundraising efforts need to be ongoing.
However, the picture isn’t as gloomy as my opening paragraph suggests. There is some ‘Good News‘. I have been amazed at people’s generosity during the past year and at the efforts that some people have put in to raise money for our Society; we have received donations ranging from just under £5 to over £1000 from companies and individuals. Money has been raised in collection boxes, from sponsorship, from a disco, a coffee morning, a concert and from school children. To name but a few, thank you James, Tom, Gemma, Tracey and Julian. The Christmas Cards have raised well over £500 so far. They were on sale at the Conference at the greatly reduced price of £2 per pack. (There is also an order form with this newsletter for anyone else who wants to take advantage of this offer.) Once more, our grateful thanks to Petra and Flo-print for their support. A competition for a new design will be held at Conference 2006 so that new cards will be available for Christmas 2006.
The sums donated or raised don’t have to be large. Two of our younger supporters, Sam and David saved their pennies and gave us £4.91. If every family on our mailing list did the same, it would raise over £1,400! (If anyone wants to do this, I can send them a small flat pack collecting box.)
There are other ways of helping the Society apart from the above. You can become a ‘Friend’. (Five more ‘Friends’ have joined since the last newsletter was issued.) Those of you who are ‘Friends’ perhaps know someone else who would like to support us in this way. Many companies adopt a ‘Charity of the year’ and the best way to encourage them to choose our Society is via an employee. If you work for a company, please consider approaching management with your suggestion and let me know if you need any literature or a letter to back up your request. Some companies also have a scheme where they match pound for pound any charitable fund-raising of their employees. It is worth enquiring if your employers operate such a scheme.
We must congratulate Mickael Laurans for completing the London Marathon. He has raised over £1,200 to date, a truly splendid effort. Chris and Phil Humphreys have raised over £2000 with a Megabowl event and special raffle. Other ideas being looked at include us taking part in the Great Weather Lottery, organising an internet auction and selling special calendars. In the meantime, I shall continue my efforts in trying to get grants for future conferences.
Finally, a big ‘thank you’ to everyone who has supported us by making a donation, fundraising, buying Christmas cards and by joining the ‘Friends of LMBBS’.
Anne Crotty
Fundraising Co-ordinator.
The 8th March 2005 saw 50 friends and family meet at our local Mega Bowl in Newport, to take part in ‘The Great Blindfold Mega Bowl Challenge’. The first game was sighted, which for some proved too much, with the ball leaping over three lanes and then, there were those who followed the ball down the lane, with it still attached to their finger!!
Second half and the competition became intense, with sounds of ‘cheating put your blindfold on’ ringing across the hall. The aim of the game was to be totally blind, being led by a team member to collect the ball and throw; I must say that some had a better game blindfolded.
At the end of the evening with no expense spared ‘gold medals’ were issued to the winning team and wooden spoons with sad faces to the losers, but as one of the losing team said, ‘I had to be here to win it, so I am also a winner.’
Together we raised a whopping £1,030.00
If anyone would like information on organising a similar event please contact Chris on 01633 718415 or e-mail chris.humphreys4@ntlworld.com
One of the Mega Bowl team members is the mother of Ryan Jones, a member of the Welsh Six Nations Rugby Squad. When his Mum asked him to sponsor her for the Mega Bowl, he replied ‘NO’, but I will donate a signed Rugby Ball from the Squad.
After prising the ball from Phil, I quickly sent out 10 books of raffle tickets with friends and family, along with a signed letter from Ryan. Those of you who are not Welsh will not understand the excitement and fervour there has been to acquire this ball with children and adults asking just to be photographed holding it and, with offers of payment to the winner if he/she were prepared to part with it. The day of the draw, Saturday 19th March 2005, was frenetic with someone ringing as late as 3pm asking if there were any tickets left. The winner, Dave Griffiths from Cardiff, was not prepared to sell it and the ball has now left pride and place in our house, to take pride and place in his.
As a result of Ryan’s kind gesture, we raised a staggering £1,018.00 for the Society. A big thank you to Ryan and his team mates for their generosity.
Gemma Staples, whose cousin Stephen has LMBBS, arranged a lunchtime concert to raise funds for the Society. Gemma is a joint honours music and psychology student at Bath Spa University and asked her fellow students to perform in the concert, which was held at The Michael Tippert Centre on 26th November 2004.
At the beginning of the concert, Gemma gave a small talk about LMBBS and explained how the Society is self-funding, relying on donations and fund-raising. The concert then commenced with several of Gemma’s friends playing classical pieces or singing songs from the shows. Gemma and Joanne Latham played a duet on their clarinets.
The concert ended on a high note with Joanne Latham and Jenny Bolton dressed as cats, singing ‘Duetto Buffo di Due Gatti’. The translation is ‘Comic Duet for 2 cats’. Apparently Rossini imitated cat sounds outside his mistress's window at 3am every morning so that she would let him in. Rossini composed the duet in 1829, in commemoration. It certainly went down well with all who attended and the laughter echoed around the auditorium.
The concert ended with Jill Staples, Gemma's Mum, talking about the LMBBS Family Conference which she had attended as a speaker and delegate that year, and how much it had helped her. She also stressed how important the Conference was, especially as it gave the parents an opportunity to meet and share experiences.
Finally, the audience were asked to give donations or to buy Christmas cards and they responded by raising £50.
Stop Press: Gemma is hoping to do another concert after her finals in June this year. This time however, it will be an evening event with tickets going on sale, so if you are in the Bath area, and would like to attend, send us your details and we will pass them on to Jill.
Our sincere thanks go to Jill, Gemma and all Gemma’s friends for their efforts and their much appreciated support of the Society.
Mickael Laurans ran the London Marathon to raise funds for two charities close to his heart. Together with his brother (who has LMBBS) and their mother, they attended last year’s conference, as Mickael’s mother was hoping to start a similar group in France. One year on and Mickael achieved his goal in a very impressive time of 4 hours 58 minutes and 31 seconds. He was placed 25,328th out of 35,000 odd runners.
Mickael contacted the Society recently and wrote:
‘Let me put your minds at rest, I did survive it and I did complete it! OK it took me a bit longer than I thought it would, but being overtaken by a Womble and a giant sunflower really spurred me into running harder and beating them. I won’t deny that it was hard and tiring but the time went past so quickly and the crowds and fantastic atmosphere just carried me over the line. I felt good all the way through, didn’t hit the dreaded ‘wall’ and it was so much easier than training during the winter months. I still have some difficulty walking but am slowly recovering. I can’t wait to go running again now that the sun is out, this marathon thing did a lot of good as I lost over a stone through training for it.’
As reported in the fundraising round-up, Mickael has raised over £1,200, it will be nearer £1,500 by the time all monies are collected and the gift aid is calculated. This will be divided between the LMBBS in the UK and France. Our many congratulations and thanks go to Mickael for such a fantastic effort on behalf of the Society.
***STOP PRESS***
Mickael is already planning to run in next year’s marathon and has several friends who would like to join him. Mickael said ‘some of my friends have been very impressed with my training for and completing the marathon and they think that if someone like me can do it, they could do it.’
If you feel inspired by Mickael’s efforts and would seriously like to consider having a go next year and can guarantee a minimum sponsorship of £400, the Society can obtain an entry bond on your behalf. Contact Anne Crotty for further details.
Recipe supplied by Hollie Sales age 10
Serves 4 - 215 Kcals/4.2g fat per portion
Ingredients
4 boneless skinless chicken breasts
15ml/1 tblsp lemon juice
45ml/3 tblsp tandoori paste
45ml/3 tblsp low fat natural yogurt
1 clove garlic, crushed
30ml/2tblsp chopped fresh coriander
1 small onion cut into wedges and separated into layers
15ml/1 tblsp oil for brushing
Salt and black pepper (optional)
Fresh coriander sprigs to garnish
Dear Tonia
I found the newsletter interesting but I would have liked a little more information about Daniel and how the Syndrome affected him. You said in the newsletter that you liked reading the profiles because it gave you an insight on how other people with the Syndrome tackled the problems caused by it. The real problem I think you have with this condition is that not many people’s lives are very similar. It affects people in such a diverse way. Also everybody’s road of life along which they travel is different. I have not heard of anybody who comes near to the pattern of how this puzzling condition affected me.
Graham Lilley
The personal perspectives in the last newsletter were from a grandmother’s viewpoint and were about the feelings experienced from that perspective, so it wasn’t really about Daniel. Maybe sometime in the future, myself or Dan (or both) will put pen to paper. I would love to hear from anyone who feels, like Graham, that they are affected in ways that they havn’t heard of in anyone else. Ed.
Lucy is 22 years old and has LMBBS. As her letter shows, she is making great strides in her quest for independence and is an inspiration to us all, able-bodied and disabled alike.
Her letter begins:
“I cannot believe that we are nearing the end of yet another year, where has it gone! I cannot quite believe that at the beginning of the year I was still at Reigate College studying hard for my A levels. Well, I got a double A for Health and Social Care and an A for As Sociology. This has led me onto what I am doing now. I am now studying a part-time degree, with the OU in Health and Social Care, I started in October 2004. I have completed the first two assignments and am about to do the third and have done relatively well, so far. It is a tough course with loads of reading, however I am enjoying the content of the course. It is very interesting and links well to my job”.
Lucy is working as a Direct Payments Adviser for Surrey Independent Living Council and works a total of 25 hours over three days. She has a ‘fantastic personal assistant’ who assists her with all aspects of her job and as of January has her own client group, which Lucy said “is rather scary but exciting all at the same time.”
At the end of September, Lucy was accepted onto the waiting list for a guide dog after a successful three-day training course. She has also been out and about on her own and travelled up to London on the train for a committee meeting. She writes “I did have to book assistance for the trains, but I did it pretty much independently”.
Lucy’s letter continues: “ I cannot quite believe all that I have achieved in one year! I am not sure that there is any stopping me now! It is hard to imagine that this time last year I could not go outside my house without assistance. I think that there are times when mum would prefer it if I wasn’t doing all this, particularly as I rather abuse my independence, but then it has taken me 22 years to get to this stage!”
As well as being a member of Hearing and Sight Impaired UK, Lucy was elected in August to sit on the steering group for the See me Hear me project. Lucy writes “This is an exciting new project that I am extremely lucky to be involved in.”
Lucy has also been exercising regularly with visits to the gym and taking part in the Edinburgh marathon, running 7.2 miles in 2 hours and 12 minutes. In March, Lucy started horse riding again. She writes “I never thought that I would ride again, but it is the best thing I have ever done.”
We wish Lucy every success with her studies and career and would love to hear more from her or any of our other readers in the future.
After 16
Information and advice on all aspects of transition planning
Web address: www.after16.org.uk
Disabled Living Foundation
Advice and information on equipment, gadgets and where to find them. Tel: 0845 130 9177
Web address: www.dlf.org.uk
Independent Living Funds
Information and application forms for the Independent Living Fund. Tel: 0845 601 8815
Web address: www.ilf.org.uk
The Good Access Guide
Online directory of accessible leisure pursuits.
Tel: 0870 241 6129
Web address: www.goodaccessguide.co.uk
Disabled Parents Network
For disabled people who are parents or who hope to become parents, and their families, friends and supporters.
Tel: 0870 241 0450
Web address: www.disabledparentsnetwork.org.uk
National Disability Arts Forum
Aims to create equality of opportunity for disabled people in all arts. E.Mail: ndaf@ndaf.org
Web address: www.ndaf.org
Benefits Enquiry Line
Confidential and general advice on all benefits
Tel: 0800 882 200
New Deal for Disabled People
Gives unemployed people help and support to get into work
Tel: 0800 137 777
Web address: www.newdeal.gov.uk
