Terry Hoey the Chairman of the Palmerston Residents Association has spoken of his fears of XLP,HLH,EVB,he wants to raise the profile on these disease Terry Hoey s and make our doctors and hospitals look further when they see a child with glandular fever.

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

We would like to thank Chris Deconnink for all the support he has given us during 08 in relation to supporting are grant for Disabled Learners Classes that we will now be able to set up in the new year Chris has always been very supportive in our projects but we feel that our classes will enable us to help our disabled community and allow them to access the Internet and to open up a whole new way of life for them.

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.Contact Terry Hoey C/o 86 Palmerston Road Sydenham Belfast Northern Ireland BT4 1QD

The Palmerston Residents Association have been in contact with the Education Board since 20th March2008 we were informed at the time the Board intended to close the Sydenham Youth Centre, as the Centre is situated on the Palmerston Road the Association felt it should have been consulted regarding the decision of the Board,the association have always taken a stand for the Community it represents. Our Constitution is founded on the basis of  principals we will not go back on. We stand up for our Senior Citizens,our Disabled Community, our Youth,and our Ethnic Community.

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.