The Palmerston Residents Association would also like to thank Wesley Housing Associations Beverley Surgenor for agreeing to let the residents association place a plaque depicting the Smiles Family the history of the family in the local community and connections to Gustav Wolff, and their links to the Belfast Rope Works. This will give the community of Sydenham much pride, the plaque will be placed outside the development with a small garden to enable the community and its visitors to know the Smiles Family once lived on the site that is now the new development, this is a great achievement showing just how local communities and private enterprise can work together in building better community relations. We hope to work with Wesley Housing Association on other projects within the area.

We look  forward to the official opening of their new development ,and we wish them every success for the future, they have done a great job in improving the area and making sure that the surroundings complemented the area.           

We will work together on the proposed new Stadium planned for the Holywood Road in East Belfast, both groups have fears the site will destroy one of Northern Irelands prestigious routes along the Holywood Road and may wipe out a number of the green spaces.

The proposal is to replace the green spaces with 4000 car park spaces, the community groups involved feel this just cannot be allowed to happen, to destroy green spaces to accommodate a car park is unbelievable. We say to the the Belfast City Council to name any other City in Europe that would destroy a park,trees and wildlife habitat to replace with a car park.

The Planned Stadium will cause so many restrictions to the residents of the Lower Holywood Road, also two of our major schools in the area Ashfield Boys High School And Ashfield Girls High School, it begs the question has any thought gone into this plan, we already have a bottle neck at the Knocknagoney Roundabout on the Holywood Road and the Parkway entrances to the Belfast Side of the Sydenham By Pass at early morning  and throughout the day.

Our greatest fear would be on a match day, we have a lot of young mothers and senior citizens who travel along the Holywood Road to Tesco and the Holywood Exchange, what would the effect be on them if the Stadium was to hold a rock concert how would they get out to shops. We must remember that our planning services have not taken into account the need for local shops in the communities that will live around the proposed Stadium.

We also fear the volume of new vehicles that will travel along the Sydenham By Pass to the Stadium and new traffic that will also travel along to and from the Stadium along Parkway and the Holywood Road. This will make it almost impossible for local residents to carry on their normal daily lives .

Our community will lose out by the removal of our Children's Park, Football Pitches,and the local site that is used for lighting the seasonal bonfire, also clubs that  use the park for model airplane flying it has taken very hard work on behalf of community workers in the area to build a community for our young people, to see the possibility of them losing more resources in an area is beyond belief, the community has already been robbed of one asset to the area that being the Sydenham Youth Hall.

Our groups would like to see a full public inquiry into this proposed site, and to see impact studies on Traffic,Green Spaces,Wildlife and what effect it will have to local residents who live on the lower Holywood Road in their day to day existence. This is a major development planned for the area, we feel that our residents must have a say in this matter before the first sod is cut.

I first notified the Department of the Environment / Northern Ireland Environment Agency (the 'Challenged Party' or 'CP'), of our interest in having properties at 2 & 4 Station Road, Sydenham, Belfast, BT4 1RE, (the 'subject properties'), listed in and around October 2007; I mentioned in e-mail correspondence at this time my knowledge of the connection between the subject properties and Mr Gustav Wilhelm Wolff, co-founder of Harland & Wolff shipyards and former MP for the East Belfast constituency.

Around 3 months passed and I had heard nothing further from the CP and therefore was becoming anxious that any action was not being taken expeditiously as the properties were in my belief in risk of demolition. I sent a further e-mail in January 2008 to Mr Kirby at the CP, again enquiring of their position in relation to the subject properties and raising my concerns that the properties may be subjected to demolition and therefore requesting that 'spot-listing' be considered by them. In response to this e-mail of same date, Mr Kirby advised that the Senior Conservation Architect would be viewing the subject properties the following day. Copies of the e-mail correspondence referred to in this statement are attached hereto.

I also sent a letter to the Office of the First and Deputy First Minister, dated 27^th January 2008, in which I canvassed for the support of the Senior Ministers in protecting the subject properties, not least because of the perceived risk of demolition. I made clear therein my belief that the properties were worthy of protection because of their historic links to Mr Gustav Wilhelm Wolff. A response to this letter from the Office of First and Deputy First Minister was received, dated 31^st January 2008, stating that the previously mentioned letter had been passed to the CP.

A substantial response from the CP in relation to my letter dated 27^th January 2008 was received, dated 20^th February 2008. The response noted the issues raised by me in respect of the subject properties, in particular it references my plea that the buildings be "saved from destruction" "because of their historical connection with Gustav Wilhelm Wolff and because holding onto this part of our history would sit very well with the Titanic Quarter'". The letter explained that the matter would be considered in due course by Mr Manus Deery, Principal Architect, who would decide whether the properties were worthy of being 'spot listed'.

The next item of correspondence which I received was a letter from Mr Manus Deery, dated 28^th March 2008, advising that the CP was in the process of inspecting and gathering information on the subject properties to determine if same would meet the legislative test for listing. I am aware the subject properties were indeed 'spot listed' in and around the 17^th July 2008.

After hearing that the subject properties had been demolished in and around January 2009, but in advance of hearing of the CP's decision, I contacted my local MLA, Councillor Naomi Long regarding the matter. I am aware that Cllr Long wrote to Councillor Sammy Wilson MP MLA, Minister of the Environment. In Cllr Long's letter to Cllr Wilson, Cllr Long posed a number of questions:

1.      Cllr Long pointed out that it appeared "bizarre" that "at a time when the Northern Ireland Executive and Belfast City Council are investing in a new Titanic Signature project to promote the City's links with that famous vessel...that authentic heritage directly linked to the shipyard is permitted to be demolished."

2.      Whether a formal decision not to list the subject properties was taken and if so, the rationale for this.

3.      Conversely to 2, whether the BPNs were allowed to lapse, permitting the subject properties to be demolished.

A fellow-member of the Association then received a letter from the CP dated 12^th February 2009. This letter advised that a Building Preservation Notice (BPN) was issued by the CP on each of the subject properties on 17^th July 2008, affording both properties protection for a period of 6 months. (up to and including 16^th January 2009). The letter advised that the CP:

"considered all of the available evidence, consultations and representations and concluded that the buildings did not meet the test of Article 42 of the Planning Order 1991 [as amended] i.e. that they did not meet the test of "special architectural or historic interest" required for permanent protection as listed buildings."

The CP then explained its decision in view of the fact that a BPN was initially served upon the owners of the subject properties:

"The substantive difference between the initial and final decision by the Department was the establishment that the buildings were not as unusual and rare as initially thought.....in our view an argument that they were of special architectural interest could not be sustained".

I understand that this view was based on the fact that one of the subject properties had had its Victorian-style interior added in the late Twentieth century whilst the other property's interior had been completely modernised. 'External changes' to the property were also mentioned and in the CP's view this contributed to the decision reached by them.

The letter also addressed my arguments that the buildings should have been protected by reason of their historical association with Gustav Wilhelm Wolff. The CP acknowledges that their own research confirmed the information which had been provided by me and the Association:

"The structures were indeed part of his now gone estate known as 'the Den'. However....though of interest, this was not sufficient grounds upon which to protect the buildings. It did not make the buildings objects of special historical interest".

To explain this decision, the CP made reference to Annex C of Planning Policy Statement 6 (PPS6) which states that:

"in the case of historical associations, there will generally need to be some additional quality or interest in the fabric of the building itself to justify listing. Either the building will have architectural merit in itself or it should be well preserved in a form which directly reveals its historical associations....[for example] because of the survival of

certain particular features.....".

In addition, Cllr Wilson responded to Cllr Long's letter above, and in response thereto made the following points:

1.      A decision not to list the subject properties was taken in advance of the expiration of the BPNs.

2.      As per the reasons outlined above in the correspondence from the CP to the Querist dated 12^th February 2009, the CP concluded that the subject properties were not of special architectural interest.

3.      The Minister acknowledged the historic interest in the subject properties by reason of their association with Gustav Wilhelm Wolff, however he comments that the association though of interest was not of sufficient 'weight' to justify listing. The Minister refers as his Department did to PPS6, Annex C, which is as stated above. The Minister concludes that as the subject properties had been altered since Wolff's time, historic associations were not directly revealed and therefore the subject properties were not eligible for listing.

Both myself and the Association and many of the local residents in our area are deeply aggrieved by the decision taken by the CP in respect of the subject properties. Having sought legal advice, I am not satisfied that their decision was correct. I wish to seek redress, by way of Judicial Review, to challenge their decision and have same publicly declared erroneous by a Court of law. Hopefully if we are successful this would ensure the future of other historic properties which will not suffer the same fate as a result of poor decision making by the public body in question.  

Given the fact that these fine cottages were the last remaining properties of the much larger estate belonging to Gustav Wolff known as "The Den" makes this decision even more absurd.

These cottages were fine examples of period architecture in their own right but coupled with their link to the man who co-founded the world's most famous shipyard, builders of the world's most infamous ship, makes it simply beyond the bounds of comprehension to the residents of this area that three years before the Centenary of the sinking of that great ship, that they should be erased from our midst never to return.

Indeed regardless of any link to Gustav Wolff, these Cottages should have been protected as fine examples of our architectural heritage for future generations to enjoy.

We are at a loss, to begin to try and understand the thinking behind such a grossly misjudged decision.

With the Centenary fast approaching, a Titanic Signature project is underway at the Harland & Wolff site to commemorate that globally recognised event which in turn makes the decision to allow these priceless jewels in our built heritage crown to be bull dowsed out of existence, beyond belief.

Notwithstanding his position as co-founder of Harland and Wolff shipyard he was also for eighteen years the Minister of Parliament for East Belfast which should surely count for something in its own right.

No doubt it will be an affront to the readers of this statement from whatever area or community they come from.

However this brazen act raises more questions than it answers.

Where else in the world would allow such a handsome link to the past to be erased from public view without complaint?

Would the United States of America have allowed these houses to be demolished if Harland & Wolff had of being based in New York or San Diego?

Would any country in Western Europe have acquiesced in the destruction of its valuable built heritage in this way?

Indeed, can you imagine ANY country anywhere else in the world that would treat such a valuable resource with such distain?

It is without doubt one of the most ridiculous situations to have befallen this country in terms of historical erosion.

For far too long Sydenham has received bad press and has been viewed by some as an area to be avoided.

An area with few positives to it name.

How wrong an assessment this is?

The work undertaken within our community, for our community, by our community has been nothing short of remarkable in recent years.

The goodwill and generosity of our people to commit their free time to community events and attempts to present a confident, vibrant face to the world has been humbling to be a part of.

Our work to put Sydenham back on the Map in a positive light is ongoing and will not cease.

Alas, something that could have helped us to tell the positive history of former residents is no longer amongst us.

In those Cottages we had a potential heritage site for a global audience, right on our doorstep.

They could have been incorporated into the main Titanic Project at the Harland & Wolff site and could have helped to put the great area of Sydenham, back on the world map.

This would have gone some way to restore pride in the name of Sydenham and given our youth something to hold on to and call their own.

We must question the determination of the Environmental Heritage Service that these Cottages were not suitable for listing and call upon them to provide full discloser for their findings to support their determination.

Indeed, we were expecting receipt of that report in advance of the determination but sadly to this date, it has not been received despite repeated requests.

If it is the case that current legislation could not provide safety for these Cottages given their historical links then the legislation requires an urgent root and branch review.

If new legislation is required for the future then that must be the immediate task of our law makers.

We call upon the Minister of the Environment, Sammy Wilson to put on public record his response to this tragic event.

He was quick to applaud our efforts in getting the properties spot listed but has been slow in responding to the news of their destruction.

If he shares our view that a miscarriage of justice has taken place in relation to the destruction of these properties then he is duty bound to make his position clear to the people of Northern Ireland and beyond.

However if he takes his lead from the Environmental Heritage Service as the best people to make the determination then this is a classic case of the tail wagging the Dog.

We have heard much in recent years about the benefit of having local Ministers instead of direct rule Ministers and how the future will be brighter for all as our elected representatives are closer to the people and acutely understand the needs of our Community.

We have also heard with much fanfare about the need for Northern Ireland PLC to be managed effectively and all available opportunities grasped with both hands.

This determination then begs the question, who is in charge of Northern Ireland PLC?

Is it our elected representatives or faceless unelected bureaucrats?

Who is really in charge?

We have placed our trust in the people we elected to run this society for the betterment of the community now and to secure the valuable legacy of the history we can all be proud off for the future.

If a review of this case confirms that it would have been in the greater good of the wider community that these Cottages remained standing then we can only conclude that the people standing on the bridge of the good ship Northern Ireland do not in fact have their hands on the lever of power.

They have left the direction of this issue to others.

And if any review finds that the decision made is correct and there was no value in retaining these properties then quite clearly there is no forethought of foresight of the bigger picture at the very centre of our policy makers.

If this sad situation contains no lessons for the future and there are no changes in the light of such an error, then we are surely heading towards a metaphorical iceberg of our own making and the consequences will be sadly predicable with more of the same to come.

Neil McAdam (Spokesperson)

Palmerston Residents Association

We see her as a champion for the working class people of east Belfast, once again she is the first to show her support for the community. We have to challenge our other MLA's and ask why did this happen, why were the residents not told when the building was listed by letter from the Heritage Service, and why was the developers told that the building was not being listed days before the date expired, why were the residents not given a chance to see the report the heritage carried out on the cottages

The residents look to the Heritage Service to save our history and our children's history, we feel they have let the people of Northern Ireland down and questions must be ask from the Principal Conservation Architect Mr Manus Deery as to why  he failed to respond to the Residents Association, he claimed in his letter to them on 28th March 2008 he would be in a position to provide a substantive  response within a few weeks. We also have to ask where the MLA's are now who came out in support to save the cottages, we want to know what questions the MLA's are going ask the Heritage Service, why has Sammy Wilson kept silent, when  he appeared on the local TV stations he was in support of saving our history for our children, should we ask Cllr Sammy Wilson why he let this happen.after all you know the importance of our children and their history.

We say thank you to Naomi Long for the work you do in our area and the support you give to the Sydenham community and the hard work you undertake on behalf of the Community. 

The Palmerston Residents Association

Will make A statement in the next few days

Chairman

This is what is  left of the Den on Station Road Sydenham Belfast the last remaining part of the history of the shipbuilding in Northern Ireland.The cottages that once stood on this land were bulldozed at 7.15 am on the  19th January 2009.The Residents Association fought long and hard to save the buildings for future generations, however as we the people of Sydenham should have by now realised our views are irrelevant,for to long people have done what they want within our community without asking the community what they want.

This is something different the Sydenham Community were not informed of the decision by The Northern Ireland Environment Agency as to their findings or the decision not to grant listed building status on the two cottages. We also question the departments decision to inform the owners without informing the Community of its decision.

The Residents Association are keen to work with all the government agencies to try and bring about change in the Sydenham area, but we find it hard to swallow when they totally ignore the people they represent,it is unthinkable a major government department would take this attitude. It is not unreasonable to ask why they did not keep the residents association informed of any decisions they were intending to make, this would have allowed us to enter into   talks with the owners of the site,  where we could have discussed having a permanent memorial for the founder of one of the largest shipyards in the world.

We want our government agencies to help us and involve our community when reaching  decisions and to direct and guide our communities in the way forward. We must ask the question as to how can we achieve this when we see a government department like the Environment Agency overlook the people who have ask them for guidance and  expertise. We only ask them to look at the site in question and give their opinion as to whether it  was worth saving and discuss with the community of its findings.

In our history we have seen what happens when government departments walk over communities treating them as if they do not exist. We in the residents association look to  government to work for the people who elect them and it is small communities like Sydenham and the residents association that are trying to bring real change to the area we look to government departments for guidance and help but our community feels it is irrelevant.The residents association  ask the question why has our MLAs let this happen.

How can we afford to let another part of our great shipbuilding history be wiped of the map. Do we need to look at the laws that govern historical buildings, or do we need a change of leadership at the top of the historical building unit before all of our history is gone forever. We look to other major cities all over Europe even the Soviet Union, Germany, have held on to their history but we seem to remove it when ever possible.

Hospitals and doctors must be aware of the signs to look out for with these diseases, it not enough to see a child and think it is glandular fever,my grandson was ill for a few weeks on seeing the doctor was prescribed calpol when he had a very high temperature his mum and dad took him to the hospital. After tests were carried out he was diagnosed with glandular fever. after a period of time Cavan's doctor felt he should be recovering as he was not blood tests were taken and sent to Bristol children's hospital and Great Ormond Street. Cavan was then taken by ambulance to Bristol Children's hospital where they had diagnosed HLH from his blood tests. More tests on Cavan revealed EBV and XLP

XLP is passed on by the mother and it affects only the males in the family. There are a hundred families in the world who have it but they cannot say how many may have it where it has not yet been triggered. The more people who ask their doctors about XLP the more they will look into this disease.

HLH can affect both sexes and happens in children also, (HLH)is a rare disorder affecting young children at a very early age ,but is found in patients of all ages patients with active HLH too many histiocytes as well as lymphocytes (another kind of infection- fighting cell)both of which are so-called white blood cells that may cause inflammation (swelling,redness,heat,pain,and loss of function) these cells then begin to penetrate and accumulate in the good tissue and cause damage to a variety of organs some possible sites of involvement include:bone marrow,lymph nodes,liver,spleen,skin,membranes surrounding the brain,spinal cord,or,more rarely, the brain its self.

What Causes HLH scientists do not yet know all the complicated process involved in this disease. There are two major forms of HLH one known as primary form,is inherited the other is known as the secondary form, the disease develops secondary to inappropriate (abnormal)activity of the immune system this can occur after the use of immunosuppressive therapy and/or infections researched by (Histiocytosis Association Of America)

Terry wants to see all woman screened in early pregnancy to check if they carry the gene to enable the family decide the way forward.These diseases are dreadful and the treatment is huge terry wants all our parties to look at this and encourage our health service to be on the look out for these diseases

Terry Hoey has set up a Trust Fund for his grandson Called The Cavan Tommy Hoey Trust he would ask anyone who wishes to donate to the fund to do so by cheque to

The Cavan Tommy Hoey Trust (Ireland)

C/O 86 Palmerston Road

Sydenham

Belfast

Co Antrim

Northern Ireland

BT4 1QD                email terryhoey@the-cavan-tommy-hoey-trust.org

Terry would also like to thank the people who have all ready given to the fund. We would ask anyone wanting to hold  fund raising events for Cavan to please register with either of the trusts.

We would also like to thank all the people of Cornwall Cavan's home town of Bodmin for all the great work they are doing for the trust and the events that are going on to raise funds we have set up a trust in Cornwall it is

The Cavan Tommy Hoey Trust (Cornwall)

C/O Jen Gendall

6 Springwell Mews

Lovelane

Bodmin

Pl31-2QP               email jen.gendall@the-cavan-tommy-hoey-trust.org

We are looking for  sponsors at present as we will be setting up Cavan's new web site interested parties  contact the organiser@the-cavan-tommy-hoey-trust.org

PLEASE HELP ME AND THE CAVAN TOMMY HOEY TRUST GET THIS WORD OUT AND HELP US TO SAVE LIVES IN OUR YOUNG CHILDREN SO PLEASE HELP LOBBY OUR MLAS FOR SCREENING OF THIS GENE

Donate to Cheque's Only Please

The Cavan Tommy Hoey Trust (IRL) C/o 86 Palmerston Road Sydenham Belfast  Northern Ireland BT4 1QD

The Cavan Tommy Hoey Trust (Cornwall) 6 Springwell Lovelane Bodmin PL31 2QP

Contact Northern Ireland Terry Hoey       Contact Cornwall Jen Gendall 

We have seen so many development sites left as fly tips without being fenced off, it just shows what high regard the developers hold for the people of Sydenham and what respect they hold for our children who are put in danger by these sites left in an unsafe condition,we call on those responsible to take a second look at how they have left their sites and think again regarding security. I cannot understand their thinking, it is an open invitation to anyone wanting to have a fall on someone elses land and put a huge claim in.

We have seen the residents association grow from strength to strength this year and we have achieved a lot, thanks to the hard work of our members. just look at what we have achieved since our first meeting in June 07 Tree Protection Orders  on all the trees on the Palmerston Road and the Hill at Dennorton Park. we have succeeded in spot listing the Gustav Wolff Cottages at Station Road, we are in contact with Wesley Housing Association regarding a sign to depict the Smiles Family on the Palmerston Road,we have also been in contact with the Belfast Historical Society in regard to having a Blue Plaque put on the former residence of Stewart Parker play write on the Larkfield Road.

We are seeing  our notice boards going up on many main road in and out of Sydenham we are also very pleased with  contacts that we have made with Northern Ireland Railways, our agreement reached by both of us to work together in making Sydenham Station become one of the prime halts on the Bangor line.We have to say a big thank you to  Mr Gerard McAtarsney of Station Management for the great work in placing two stands for our notice boards and also the safety fence that has been built for the benefit of the community. we are very pleased in the way Northern Ireland Railways wants to work with community associations and has listened to the association on the needs of the community in the Sydenham area and we look forward to working with him in the future.

We have seen many new groups start up in the Sydenham area and we welcome them all as part of our community, we have seen many changes in how we want change brought about. We have seen the formation of groups for and against the airport, and  groups for the protection of Victoria Park. Also the forming  of the Sydenham Community Partnership headed by Chris Deconnink ,we would like to thank Chris for every thing that he does for the Sydenham Community and for all the hard work that he does within our community. I have seen Chris working late into the night and is hands on in helping with all events a really big thanks to you Chris for this

We have seen our first event taking place with the Church of Ireland on the Larkfield Road we would like to thank the Minister for all the hard work by himself and the people of the church to make this event happen we say a big thank you to Francy McCrea Minister

in letting us hold the event in the church grounds and the church hall and for taking time with our visitors from Finglas in the South of Ireland. This was our first ever event and without his expertise we would have had a problem. We would also thank Chris Deconnink for his input in this event he worked very hard indeed to make sure that our visitors were treated well, we would also thank him for his experience in putting an event like this on and we hope to work with him again on another project for the Sydenham Youth in the coming summer months once more Big Thanks to Francy and Chris for all your work.

Neighbourhood Watch we are pleased to say that our neighbourhood watch scheme is also going from strength to strength we are bringing on new areas to help the community feel safer. We hope to have signs up on Station Road, Larkfield Road ,Victoria Road and Inverary Drive, this will cover all major routes in to the area,  we are hoping to bring on more in the new year. We would like to thank Sean McCormmick for all the time he has taken in making sure that things happen when they are supposed to. Many Thanks Sean

Policing in the Area we would like to thank the PSNI of Northern Ireland for all the hard work they do in our area and for the time they take in attending meetings some of which they get a very hard time at, we would like to thank the Police at Strandtown for the hard work they do for so little praise. many many thanks

New Links we have been making new links with other groups this year,  and we are pleased with the links we now have with the Inverary Community, we want to work closer with them in events and community projects and working with the Sydenham Youth to help them feel included in the decisions being made in the Community. We have also made better links with the Inverary Community Centre and we wish to thank all the staff for the hard work that they do in the centre, we also say special thanks to Sandra Workman who does a great job in the Sydenham Community and works hard for the whole community of Sydenham in times when she is unwell her self, many thanks Sandra For all you do and the hard work you put in.(a real community worker)

The Palmerston Residents Association is for the whole community and is open to people who would like to become members we like to think that we care what happens in our community, not just to stop developments or new apartments but to make change in the area we live in and to bring about real change to all the residents in the Sydenham Area. We have a big job to do and many things to put right we are here because we need to be we want our community to get all that is on offer to them, community grants being spent on the community and the area being regenerated.The residents association will fight for change in the area and will help anyone who can bring about change for the good of the Sydenham area,  we will work with our council to bring about change to our streets to make them safer for the whole community.We will work with Belfast City Airport to bring about change in the way they handle noise pollution and in the way they handle the environmental issues like Victoria Park, as chairman of the residents association I feel it is better to be on the inside talking than being on the outside shouting. Change only happens when someone wants to listen, I feel its time to engage with the airport and not just shout about it. I feel the airport is here to stay and is going nowhere and its time to work with them on issues that impact on us all.

I would like to thank everyone for all the hard work they have done for us in the past year and hope you all have a good new year and hope to see you all in the new year

Best Regards

Terry Hoey        

The classes will be starting early next year we will have places for five people at the beginning but we are hoping to expand on this as time goes on we will also be holding classes for our senior citizens to enable them to access the Internet giving them more choice in how they live in regard to online shopping,emailing and Online Banking we will be keeping our classes small to enable our learners to have a better chance to interact with the instructors.

Classes will be held in community centres and church halls to enable citizens have a much easier access to them and any one wanting  to join a class will have to apply  to the residents association for booking information.

For more information on Classes Contact Terry Hoey C/o Palmerston Residents Association 86 Palmerston Road Sydenham Belfast Northern Ireland BT4 1QD

Our grandson has lost an inconceivable amount of weight and the drugs he has to take to try to fight off the infections are incredible. We rely on medical research to tackle this disease to help young children fight it with better odds than they have at present. When we see our grandson and how he is now it just rips your heart out.
XLP is a genetic disease could it be tested for before birth and the gene fixed before birth, this must be possible we can do so much but we cannot solve this problem why?
when you see and live with the results of this disease and the uncertainty of it all, and the impact it will have on our grandsons life. We have to ask how this can happen in a world that is so far advanced and has made so many medical achievements, but this gene cannot be cracked.

As the grandparents of Cavan we have decided to set up a trust fund for him as we cannot be sure of the outcome of the XLP.  His doctors are giving him chemotherapy by lumber puncture to kill off lymphasites in his brain.  We do not know what effect this will have on his brain We ask the readers of ZIMBIO to Lobby their drug manufacturers to look at XLP and to help us get the word out regarding this disease please when you read this article make up your mind to  join with us in a search for a drug that will wipe this disease of the face of the earth .

Our grandson had glandular fever and seems to have been the trigger for it how many more parents in the world could be at risk of this disease and do not know they are passing it on to the boys in their families. as XLP only attacks boys and is passed on by the mother. Help us to help them make

XLP known throughout the world and press for research.
                                                                              

My wife and I travelled over to England to see him we had been in constant contact with our son on the journey down from Stranraer to Cornwall our son rang us and told us he was being moved to the Children's Hospital in Bristol as the Hospital in Cornwall felt that he may have HLH,in its self this is a life threatening illness but at that time we were not aware  just how sick our grandson was when we were on the Motorway we passed his Ambulance taking him to Bristol Hospital,we did not think over the next few weeks just what a roller coaster we had got on.

Our grandson has been fighting a battle his mum and dad was told at one time that the next 48hrs would be crucial to him as he had had a seizure we were then told that he had the EBV,Virus as well it took some days before the Hospital could confirm that he had XLP this disease is thought to affect less than 1 child in a million due to this doctors know little about the disease our little grandson is a real fighter he has to take so many drugs to enable his little body to fight off the disease who would have thought that something like glandular fever could trigger this off.

How Common Is XLP

This disease is extremely rare 100 families with XLP are known world wide the cause of the condition was only found in 1999 it is caused by a mutation or even a mistake in genes the treatment at the this time is anti- viral medicines and immunoglobulin therapy or steroids the child may receive a variety of treatments .Bone marrow transplant is the definitive treatment of choice 70% of individuals with XLP die by the age of ten years without any treatment. However, as we are learning more about the Disease they are identifying adults with milder forms of the condition

(Great Ormond Street Hospital)

I have supported many causes since setting up the Residents Association and I feel that more has to be done to research into this disease and that XLP should be highlighted and I intend to do just that,as Jason and Debs and Maeve live in England and we live in Northern Ireland our family members intend to set up a Trust Fund for Cavan to help with family support for them we have also received information that Bodmin Community also want to set up a fund to support them.  We hope to link with them to enable us to raise funds for  { The Cavan Tommy Hoey Trust } we would also like to Mention the Support that has been given by C L I C  in Bristol as they have been a great support to Jason, Debs And Maeve at this time. Our whole family would like to thank the Bristol Children's Hospital for all the care they are giving our grandson at this time and would also like to thank all the nurses for showing such care to our grandson and to the doctors who are treating him at this time.

We would ask anyone reading this to help and support this cause either in funding or letters of support to

The Cavan Tommy Hoey Trust C/o 86 Palmerston Road,Sydenham,Belfast,Northern Ireland, email terryhoey@ntlworld.com

The Palmerston Residents Association have always fought long and hard for the rights of the community, which is Sydenham in entirety, not as it is known by our officials as Sydenham One, Sydenham Two,and Sydenham Three, our community spreads to the whole of our community and that is Sydenham. We are proud of it and its history,  we believe  that our politicians and government founders should wake up to this, Sydenham is a community that has been ravaged by developers and by groups who act for our community who do not live here and do not see what their decisions do to our community.

We have ask the Education Board since the 20th March 2008 how it reached its EQIA under section 75 of the Northern Ireland Act 1998 and how it carried out the consultation process to ensure all communities in the area had been consulted, how the information was presented to them and in what formats. Was the consultation process in accordance with the Guiding Principles set out by the Equality Commission for Northern Ireland, the main groups to section 75 categories Religious Belief,Political Opinion,Racial Group,Gender,Marital Status,Age,Persons with a Disability,Persons with Dependants, Sexual Orientation.

 Our community should be consulted on how a public building that has cost tax payers money to build is to be disposed off. The Education Board has a duty to the community to fully consult with them before any action is taken to dispose  or relocate a public building. We feel the Sydenham Community has not been properly consulted on this issue we have ask the Education Board many many times to hold an audit in the area, to enable them to find out what youth provision is required in the Sydenham area, and to look at groups from the disabled community, the Ethnic Community and people of different faiths. We felt that if groups where excluded it would sore up problems for our community in the long term.

The Residents Association would refer to the Education Boards letter of the 22nd July 2008 SM/CMcQ in its summary Paragraph 5, It is the view of the board that any adverse impact as a result of closure of the Sydenham Youth Facility was mitigated and therefore did not require an Equality Impact Assessment.  We would also refer the board to its response to the Palmerston Residents Association under the heading 'Audits in the Area for Purpose of Closure' states I am unclear what you mean by audits in the area for the purpose of closure' I am unaware of any audits conducted in the area for the purpose of closure in these circumstances for this or any other BELB building. The original purpose of closure was to protect the health and safety of the staff and the users is a legal matter and is not an issue on which the BELB could or would consult local residents.

The Residents Association feel that if the building was closed on the grounds of health and safety to protect the staff and the users why then did it fail to disclose to the residents association what type of asbestos was in the youth centre and if it was that serious of a threat why were no hazard warning signs displayed around the outside of the building warning our community of the dangers that lay with in. We also requested in our letter to the Board 5th August 2008 to supply us with what measures have been taken to safe guard the public from entering the building and causing damage to the Asbestos.

The Residents Association has in its procession an audit that had been carried out in the area  under the heading Sydenham Youth Audit  Commissioned by East Belfast Area Youth Project and Strand Presbyterian Church. We refer to our letter of the 5th august 2008 under the heading 'Audits' we ask was the Boards Decision to relocate to Strand Presbyterian Church influenced by this audit. We refer to the Boards letter dated 10th October 2008 where it states the boards decision to relocate its services was explained in previous correspondence and was in no way influenced by the audit carried out by Converge.

The Residents Association feel that if any audit should have taken place it should have been screened under section 75, we feel the audit that took place for Strand Presbyterian Church should have been screened for the purpose of section 75  to make sure it had covered the main groups relevant to the section,the association feel the Education Board should have carried out an audit in the area to include all categories in section 75. The association are concerned the youth in the area who may not want to attend church will fall through the net,we feel this issue will not go away and it must be fixed before the youth in the area feel they have been sidelined.

The Residents Association meeting with the Education Board was in a response to their letter of the 10th Oct 2008 as it stated it wanted to meet with us once more. We ask  the board to carry out an audit in the area to enable it to realise what youth provision was needed in the area, we also refer to their letter of the 10th Oct 2008 where it states the youth service in Belfast,in tandem with the other four education and library boards,will shortly be advertising a new registration process as the result of an equality impact assessment of the registration and grant aid schemes.This will be an opportunity for youth groups,including section 75 groups highlighted in your letter,to register with the board with the possibility of accessing future funding. The association is pleased by this statement but it fails to put right the wrong.In not consulting the community before it relocated its youth club to Strand Presbyterian Church when it could have relocated it to mobile classrooms in the area until proper assessments under the risk of asbestos be carried out by an independent assessment by the Health and Safety Executive

The Residents Association said before the meeting that it would not discuss with the board issues we have with the board in the management of the Asbestos, and why they deemed this building surplus to requirements due to the health and safety issues when other youth clubs have been upgraded.  Health and safety issues in another building cost the board for security because it was damaged by fire and was deemed to be demolished, but then reprieved for further assessment. We can assure the board that we do not intend to let the issue drop until youth provision in the Sydenham area is audited  under section 75 to include all groups who live in our community. We  would also ask if the board carried out an audit in the area that covers all these groups would you please produce it to enable the residents association to close this issue.