Our daughter has been fortunate because of the determination and the inclusive approach used by Our Lady’s High School staff. (It should be noted here that Kayleigh is also extremely determined.) At the open evening a few months before she was due to start, we spoke to the school nurse about Kayleigh’s difficulties. Foot drop causes her to trip up; she has poor balance and tires easily when walking distances. And bowing of her forearm also meant that her hand is very weak. The nurse was interested in this rare condition but also concerned about how Kayleigh would cope. There would be many stairs, long distance between classes, heavy bags to carry and an enormous amount of writing. Kayleigh was also a little concerned but excited at the same time.

An appointment was made for her to see the Community Paediatrician with a view to getting Kayleigh some help. It was decided that a ‘statement’ would be the best way to provide for her additional needs. She was due to have an operation to lengthen her forearm and so the school set about putting the support in place. When the statement was complete Kayleigh was allocated 25 hours support which is sometimes extended by the school to 30, dependant on her needs. She receives transport to school and to weekly hydrotherapy sessions, which she attends with her support assistant. Input from Lancashire Inclusion and Educational Services provides school with advice on supporting children with physical difficulties and provides funding for ICT equipment such as her laptop and Dictaphone.

The school makes sure that Kayleigh’s classes are downstairs. She leaves them 5 minutes early to avoid the busy corridors and is accompanied by the support assistant who carries her bag and laptop. She stays in with groups of friends at break times, so that she is never alone and can socialise with others. Altogether the statementing procedure was felt to be a positive experience. Although it was done purely because of her physical problems it was felt that there had been an affect on her academic ability due to the high number of school absences because of pain, tiredness and frequent operations. The Educational Psychologists report showed that Kayleigh has above average intelligence, functioning at 4 years above her age in some areas. This gave Kayleigh a tremendous boost. Especially because the Ed Psychologist found that she also happened to be dyslexic which explained some of the difficulties she experienced with school- work. (Note for Vanessa – re link with HME and dyslexia - some of Kayleigh’s cousins are also dyslexic!)

Kayleigh is now in year 9 and has experienced nothing but success thanks to the schools sensitive, calm and proactive approach (even when new difficulties arise and complex operations are due.) The support assistants have been brilliant, one in particular has a great sense of humour, making Kayleigh laugh, which helps her to cope when things are difficult. They know how able she is and stand back allowing Kayleigh (who is fiercely independent) to do things for herself but they are close by when she is in pain or needs help. Going to school still tires her out but she is determined to do her best. I hope that by sharing our experience other families can see that moving up to High School need not be a problem.

The Erringtons
mickerrington@blueyonder.co.uk

Thanks Debbie for that piece, I would like to add that I have had the same support from Joshua’s secondary school, St Birinus Boys, and it is good to know that across the different counties the support and care is there to be used. Also under Joshua’s statement,due to his current circumstances, we have a Tutor for 10 hours per week, he comes to the house and does anything from History and Geography to helping him with his Tech homework. If anyone is having difficulty with any issue involving schooling, please let us know. We will only be too pleased to look into it with you.

Debi Roper

Case History

I have a 13 year old son, Adam. He has suffered from Multiple Osteochondromata since he was 9 months old. Adam is a spontaneous case and has had a number of operations over the years, as you can imagine this came as quite a shock. I then came across your website. I found it difficult to get any literature from the hospitals or libraries but I was amazed at what information was held on the website. At a time when I thought we were the only ones in the world that has this rare condition the website gave us a glimmer of hope. Adam entered a piece on the notice board and received many emails from other people who suffered from the same condition. This made him realise that he was not suffering alone.

When we received the first invitation to the Conference in 2001, I was excited but also apprehensive at attending, I did not know what to expect. Adam attended the workshop for the day whilst my partner and I listened to the talks that were being given. We met with Adam for lunch and he told us of the friends he had made during the morning and how they had all been comparing scares and experiences. We have attended every conference to date and Adam meets up with the same group of friends each time. I know he looks forward to the conferences and I have found them extremely helpful as I have learnt a lot more about HME.

Adam is in Year 9 at school and recently he was asked to prepare a talk on any subject for his English lesson. Adam decided to do his talk on HME, as he said “No one else will be doing a talk on this as no one else has it at my school”. From the information off the website and the conferences Adam had attended he managed to put together a 3 minute talk. Adam covered items such as what the condition is, how it affects him in his day to day routines, the areas affected on the skeleton (here he used the picture of the Bumpy Bone Tracker we have). Adam was also fortunate to obtain a X-ray from his file at hospital to use to show the class the lumps on his knees. The teacher and the class all found the talk really interesting and Adam received a B+ grade.

Both Adam and myself are really looking forward to the next conference in 2005 and would like to say a big thank you to the group for making us feel welcome and for the support they have offered.

Lynda Grisenthwaite

Also from Lynda and Adam: the word search on page 5 of this newsletter.

Thank you!

AGM Seminar 2004 Edinburgh

Having left a cold, wet and windy Luton Airport at 9.30am on Saturday 1st May, with Dawn Searle and her son Rob as travelling companions, it was a special treat to arrive in Edinburgh, to be welcomed by bright sunshine and very pleasant weather.

The weather being perfect was just the start of a successful visit to Edinburgh. Our seminar facilities adjacent to the New Royal Infirmary at Edinburgh were state of the art with a superb lecture theatre. The catering and dedicated staff matched the quality of the surroundings.

44 members, 13 children, and four speakers attended.

Members travelled from all over Scotland and north of England, with a few families having made a longer trip from the Midlands, one couple as far south as Milton Keynes, and another member flying in from Dublin. Of those who attended most had not been to Birmingham for a conference.

Our opening speaker was Professor Hamish Simpson, who is now based in Edinburgh. He repeated, at the Support Group request, the presentation made 2 years ago at our first Birmingham conference, “What is HME”. Professor Hamish explained the growth of exostoses, the assessment of the altered shape resulting from exostoses, and treatment and/or surgical options.

This led nicely onto Mr Duncan, Consultant Orthopaedic Surgeon at The Royal Hospital for Sick Children in Glasgow. Mr Duncan’s talk on “Treatment of HME in Children” concluded that childhood was an important time for children with HME as so many problems can arise and important decisions need to be taken with regard to either preventative or corrective surgery. More work needs to be done on HME, and there were still many questions unanswered.

Excellent discussion followed between members and speakers, with chair, Helen Small demanding of the speakers’ advice on where we go from here with regards to further research. It is clear after two conferences and now the seminar that not enough research has yet been done on HME, and in particular into the fact that for many adults with HME, the lumps continue to grow in adulthood. Speakers were responsive to our concerns and all agreed on the importance of raising awareness amongst GP’s and orthopaedics.

Following a short break for refreshments we held our AGM, the minutes of which are enclosed with this newsletter.

Dr Salter, Reader in Pathology, University of Edinburgh gave a fascinating insight into the structure of removed exostoses. Stimulated by earlier conversation on the number of adults with HME who have lumps still growing; Dr Salter is now keen to investigate whether the growth plate remains active in adults with HME as opposed to the growth plate stopping as normal.

Daniel Porter, also now based in Edinburgh, is now a familiar face at our conferences and seminar. He provided a varied and interesting update on current research into HME, including a number of case and family studies, which have taken place in and around Europe.

The business concluded we retired to the Main Common Room for a splendid finger buffet, and plenty of good chat. The children joined us, both exhausted and exhilarated from an afternoon visit by bus to a museum in central Edinburgh.

At 6.00pm only a few members with particular trains to catch had said a reluctant goodbye and left. Heather Emerson, a member living in Edinburgh, had had the foresight to reserve a private room at a local hotel and so the party moved on and extended into the evening.

All too soon Dawn, Rob and myself were waiting to board our plane back to Luton. We found ourselves looking out of the window at Edinburgh Airport, watching a beautiful sunset on what was the end of a very fine day indeed.

The evaluation forms appear to back up my feelings and your feedback will certainly give us inspiration when we start to organise the next conference.

And now a round of thanks….

To Daniel Porter, who booked the venue on behalf of HMESG and helped with the organisation. In addition, the support group received a £1000 grant from The London Law Trust towards the expenses of the afternoon. I would like to thank Dawn Searle, who as fundraiser continues to work hard raising invaluable funds for HMESG. Also, we must not forget all the members who have contributed so generously.

Thank you to the committee and respective spouses, who made the journey to Edinburgh and for their support on the day and efforts leading up to the conference. Special thanks also to the speakers who gave their time and commitment and provided so much for us all to talk about.

I would like to give a particular mention to Heather Emerson, who on arrival and throughout the afternoon circulated to ensure everyone felt at home, played chauffeur to several members, and arranged the evening drink. Ian Watson and Nicol Watt were also chauffeurs to several members including the committee, collecting from the airport in the morning and returning them in the evening.

Thank you Heather, Ian and Nicol.

A final big thank you to all who came to Edinburgh and contributed to ensuring the success of the afternoon.

Looking forward, we have yet to set a date for our next conference. When we do we will have lots of ideas to consider.

Thank you for your continued support.

Sarah Nicholls, Secretary

Copies are available of Mr Duncan’s slide presentation. Please send a self addressed A4 envelope with a 35p stamp on for your free copy.

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