Q: What is brown and sticky?
A: A stick!

Dr Dr I feel like a spoon
Sit down and don't stir

Dr Dr I feel like a pair of curtains
Pull yourself together

Dr Dr I'm losing my eyesight
You certainly are, this is a fish and chip shop!

(Please send in some more)
 

Questions About Having HME

As a baby I was diagnosed with HME due to a multitude of bony lumps all over my body. I cannot personally remember the diagnosis but presumably at the time was rather happy with my favourite toy. It was not, as I am sure it was for my parents, a momentous occasion. And even now at 25 I do not see HME, or rather its physical evidence, as reason either in the past or future for my life to be less or more enjoyable than any one else’s. Or my life to be seen as less or more special than anyone else’s. The fact is that if you are born with extra bits of bone then these extra bits of bone are just the same to you as those bits like legs, which are not diagnosed by the specialists as extra. This is a point that most parents and family forget. They look at it as though it is equivalent to them suddenly losing or gaining an arm which of course it is not. They immediately see an expanse of problems to be faced asking questions such as, “My God how could I have survived at school if I had two Heads”. Although not faced with that problem I am sure they had their fair share and would happily tell you how they flourished. I am sure Einstein’s mother did not worry about what would happen to him if he did not have such an amazing brain probably worrying more about his lack of football finesse. The point is that you are who you are.

The reason for me writing anything at all about my life experiences is due to me finding out that one of my young cousins has been diagnosed with HME. After speaking to his parents and being asked such questions as whether they should have any more children (complete rubbish!) and knowing that they were thinking about the horrors to be faced whilst imagining themselves with two heads in a school ground of baying children. It made me think about the effects HME would have on my cousin’s life.

Looking back at HME you realise the challenges that you have undergone and the sadness usually due to huge amounts of teasing which you have come through not to mention the lack of self esteem – if 300 people including your teachers call you mutant after a bit you start to wonder why and have the slight suspicion that they may be right. But if you ask me now if I am unhappy with no self-esteem and a life devoid of numerous parties, interesting people and a jolly looking future. I would say No! The last time I was asked was by my over mournful and sympathetic school vicar, at the time the question did not boost my confidence just increased the notion that the sooner he looked in the mirror the better.

HME has challenged me – I did not enjoy the years from 13 to 16 at all. I still harbour hatred for the sports teacher who forced us to go swimming or have showers each day showing my bony lumps to all and sundry on a daily basis. From being good at sport I quickly got given the boot from the school teams. Teachers thinking that due to my special nature I might get hurt in the scrums – so was pitched off to play basketball with the other misfits of school society – still some of my best friends today.

These are just some of the strains faced. I do not see the point in writing pages. The point is that I survived them and they built me as a person. They made me strong and by showing me at points how bad life can be they gave me an absolute determination to enjoy life and a true understanding of the value of people. How nasty and wrong it is to look down on people and to not accept people as they are. This hard learnt philosophy has allowed me to build a flourishing and enjoyable life. Because of this philosophy nothing can stand in my way.

Due to these hardships I am better and will always be better than the average Jack.

Hence the main question which I have been withering onto is: “If I could have my life again without HME would I?” The obvious answer would be “Yes” but I will say “No”. HME is a part of me; it has helped build me to who I am today. It has given me harsh experiences but without them I would be a shadow of my present self. Therefore I say to parents who ask me whether they should have any more children due to fear of HME – “Eat Cake”.

I would like to thank everyone in and associated to the Nuffield Orthopaedic Hospital for their brilliance in allowing me to enjoy my life.

James Young

The Editor

Let me welcome you to the 12th issue of our HMESG Newsletter, and sadly the last one that I shall be involved in.

About seven years ago I first started work on the Newsletter (issue 2 to be precise) and the sense of achievement I have felt each time it has been sent out has been tremendous. Every few months I used to start to wonder what I was going to fill those six pages with but luckily all my moaning and pestering used to pay off as slowly but surely articles started to come through, and what some wonderful pieces we have had.

The newsletter was my baby, I have reared and nurtured it and have watched it grow, but now feel it needs to flee my nest and move in with someone else who can hopefully love it as much as I do and give it fresh and new ideas.

Is there someone out there who feels they can do it justice? Do not let this be the last ever Newsletter, come forward and put your stamp on the HMESG Newsletter. I await with anticipation the next issue.

Wishing you all a very Happy New Year

Take care
Debi Roper

Fund Raising

Thank you to everyone who has raised money for the Group since the last Newsletter.

Thank you so much to friends of Pin Green School, Fujitsu and the Steeden family for the donation of £455.00 in lieu of flowers for the late Sandra Turvey. Sandra was a very dear friend of Dawn's who helped raise money many times for HME. Our thoughts are with you.

Thank you for the donation of £500.00 in memory of the late Roger Carter which was raised by way of a recent wonderful Memorial Concert.

Thank you to Barbara Gibbs again for arranging a great fund raiser, £510.00. (see Barbara’s letter earlier)

Donations received from Carolanne Anderson (£100), Mr & Mrs Blakey (£25), Claire Ritchie (£100), Jackie Edwards’ mum (£15), Mr & Mrs Errington (£40), Mr & Mrs Plowman (£25) and Mr & Mrs Harvey (£500). All very much appreciated, thank you.

A runner in the Flora light Women’s Challenge 2004 put us forward to receive a donation from their entry fee. Thank you very much

Experian Ltd raised £118.24 by way of a casual dress day at work and we were lucky enough to be nominated as the Charity to receive the funds. Many thanks to all involved.

Greater Manchester Police, Criminal Records Unit raised £63.04 by doing a dress down day where people came to work in football tops and jeans because England had got to the quarter final in the EUROs. Thank you to everyone who took part.

Janice Hall raised £210.00 along with her neighbours by having a street social with raffle – many thanks to everyone for your continued suppport.

Pat Savage held a lunch and bridge party in the summer and raised £150.00. A very big thank you to Pat and her friends and family.

Marian Hayes raised £150.00 on a cake stall - that is a lot of cakes! Many thanks for all her hard work.

Sarah Nicholls did some typing for her local Church Magazine and donated the money received for it - £10.00. Thank you Sarah!

Finally, but not least, Wendy Tollman raised an amazing £632.00 by holding an enormous raffle and fun day with all sorts of stalls from guessing how many sweets were in a jar to the name of a racing car driver in a formula one car. Thank you all so much.

News from Contact a Family...

Contact a Family merged with the Lady Hoare Trust on 1 December 2004. For more details please visit www.cafamily.org.uk/strategy.htm.

New "Dads' Zone"

Contact a Family, with the help of funding from the Department for Education and Skills, has developed a new section for their website - Dads' Zone. Dads' Zone provides both information that is specific to fathers and highlights how dads can use existing services to best suit them. Visit: www.cafamily.org.uk/dads.htm.

Email

Would you prefer to receive your HMESG Newsletter by email? If so, please send us an email (support@hmesg.co.uk) and let us know. There is a possibility that we may be able to offer this service later in the year. Thank you!

Moving House?

Please don't forget to let us know when you change your postal address, telephone number or email address. Thank you!

Disclaimer

Please note that any views expressed herein, by individual group members, are not those of the Group as a whole and separate entity. The HMESG cannot accept responsibility for any goods or services mentioned in the Newsletter.

HME Support Group

HME Support Group
PO Box 395
Headington DO
Oxford OX3 9WF
United Kingdom

Tel. +44 1438 861 866

Email: support@hmesg.co.uk
Web: www.hmesg.co.uk/

HME Support Group Trustees
Judith Fletcher	National Contact Midlands/Wales 0121 742 3078
Steve Harding	Treasurer
Sarah Nicholls	Secretary
Debi Roper	Newsletter Editor
Pat Savage	National Contact South 01305 772225
Dawn Searle	Fund Raising
Helen Small	Chair
Stephen Watson	National Contact North/Ireland 01204 699984

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