Everyone Loves Little Angles

the-cavan-tommy-hoey-trust.org.uk - Blog

the-cavan-tommy-hoey-trust.org.uk - Blog

Clik on the link and see our new Blog Site with Loads Of Photos and a new Forum with membership reg why not tat a look

Rare Disease Why Should You Care

I have been told I am always banging on about something, a pain in the ass, always shouting about something,In life you have choices you can go along as you do every single day and do not try to change anything as long as things are OK for you, why should you care about anyone else,and why should you care about anyone else after all life is hard enough and things are fine for me and I do not ask anyone to help me so why should I help anyone else who I do not even know or really care about,you can go on for hours giving reasons why you should not do anything.On doing my work to raise awareness of rare diseases I have heard them all people seem to live in their own little bubble of life things are OK for me thank you very much I have no time to care about anyone else let alone think about rare diseases, or children lying  in hospital for weeks with something that noone has heard of as long as I am OK I have nothing to worry about.I suppose you are right life is just hard enough and worry about someone else would just get in the way,I am one of the people who seems to care about how life is for other people and if its children it seem to make me worry more about them,you may think this is madness and you cannot change anything or no matter how much I try and do something nothing will make a difference.Life and government and the media have changed our lives forever some think for the good but others think for the worst, from early morning to late at night you are being programmed by the powers to be in how we should think or care about how we run our lives we have let TV and the Media into our homes without a thought of how they are changing how we think about each other as human beings and how we care about people who cannot help themselves,we have changed about how we view our lives and our communities where we live.The time not to worry about anyone else seems to be the norm you must ask yourself why has life changed so much why have we no time to care about anyone why do we not have time to think about people who cannot help themselves, we hear day and daily about people who are abusing the health service and abusing the benefits system and why we should not fund cures for cancers or hospital treatment, we are told day and daily about the benefit cheats people who are abusing our system  drip feeding us day and daily about the people who are cheating the country out of millions this is all great stuff its news worthy, its what they want us to worry about,its how they want you to think its PC to ring the Government dob them in lines to tell on people with in your communities about who is ripping the system of this is all great media But is it ?  ask my self why is there not the same time spent on trying to inform people about Children and families that are trying to cope with illness that man has not even found a cure for,why are we not told about how many children are hurting with illness that have not being diagnosed for weeks ,we are being programed not to think about this by the daily drip feed about how much it is costing us,Its not PC not to think what it cost to fund someone to live a little longer with their family we are told its not worth spending the money on someone who may very well not be here with in six months we seem to have become hardened to caring for people who just cant cope by themselves the need for research for rare diseases is so great and the need for funding for research is just so vital to bring about cures for rare diseases we cannot sit back and think rare disease will not happen to me if we thought in this way we would never have found cures for some cancers that were out there.Rare Disease effects Children and is usually passed on by the parents due to genes.Rare Diseases need funding from our governments and a research policy set up to help with the growing problem of rare disease and the effects it has on the children who suffer with rare disease,  and for the families and carers who look after the children diagnosed with a rare disease, the thinking must change in regard to policy and a soften up to the policy that cuts to funding for rare diseases must be relaxed until patient and family groups can try to raise funds in the same way as other major charities, like Action Cancer, Cancer Research. Rare disease patient groups are few and far between information and media coverage is none existant and leave patients vulnerable in finding expert advice and having to travel sometimes hundreds of mile for monthly visits to see their consultants, rare disease is rare but as patients families are well aware that more and more young children are showing up at hospitals presenting with symptoms of common illness only to find after weeks of investigations and blood tests, doctors diagnosis a rare disease this time that the investigations are carried out means the patient is not getting the correct treatment and sometimes no treatments exist at all, this means the doctors have to try other drugs that are usually used to treat cancer or other drugs until they find a profile that works on the patient, if this was happening in the wider population it would not be long before an outcry as to why its happening in this day and age.Rare Disease not only effects the patients, it effects the whole family circle as rare diseases are usually passed down by the mother or the father, or both. The pressure that is put on the families is immense, sometimes it causes family breakdown, Rare disease is not like any other disease,  a patient and the family have no idea of the outcome, for their loved one it usually is a life of fear that every little thing will cause infection or the patient cannot take part in normal activities they have to be watched permanently for any change or raised temperature that would show signs of a infection or seizure, that could possibility end the life of the patient,the family goes through this every single day and every single night sometimes not sleeping for days because the patient has to be constantley watched. Once more if this was happening in the general population there would be a outcry yet the families of a person with rare disease have to  go through the nightmare of rare diseases we are only a small group who are trying to make the difference for the patients and their families, we do not have the funds that other major charities have, we find it difficult to get people to listen to the plight of families that are going through the nightmare of rare disease day and daily,  if you are reading this you are reading about patients and families who have no means to raise the profile of their plight due to the lack of funding and patients are going thought this nightmare without real government funding. You could help us to help them please listen to our plea and donate to our fund please give us a chance to help this cause.

Rare Disease Day 29th Fbruary 2012 Belfast St Marks Church Holywood Road 7-00pm to 9-00-pm

We are very pleased to say that Rare Disease Day Has found a venue at Heyns Hall St Marks Church Holywood Road East Belfast, we are pleased to say that to enable them to make contact with everyone with rare diseases and disabilty there is ample parking and wheel chair access, this event is a patient and family event for everyone with rare diseases and children and adults fighting cancer and disabilty. This event is for a time to remember and to meet people with disabilty both seen and not seen, the sponsor for this event is The Cavan Tommy Hoey Trust named after a little boy who is fighting two rare diseases himself, his diseases are XLP and EBVHLH. The Trust has set this day in its calander to hold this event to coincide with the World Rare Diseases Day that takes place every single year in Europe, USA and other countries world wide.The Trust has recognized the need for patients, family members and carers to come together once a year to disscuss and  talk about how they are coping and the comfort of knowing you are not alone living with a rare disease and a disabilty, we know just what is entailed in living with and looking after someone with a rare disease and with learning disabiltys.We hope to have various groups and speakers at this event but we have it timed that you will be able to talk and to meet with other groups and with other people that are attending, and know what you are going through. We invite our local MLAs, Councillors, Doctors, and Health Services to this event to enable them to meet and to listen to your side of living with and coping with a rare disease and disabilty. Rare Disease Day is your day, take ownership of it let it help to give you a voice that can be reckoned with  the need for change in the thinking of Rare Diseases and Disabilty is not and the need is just The Cavan Tommy Hoey Trust wants inclusion for all and to stamp out exclusion  

Belfast Rare Disease Day Faces A Brick Wall Finding Venues For 2011 Event

Northern Ireland organizer for rare disease day The Cavan Tommy Hoey Trust (Ireland) has run up against nothing but brick walls this year trying to find a venue to hold the second Northern Ireland rare disease day on the 28th February 2011. The trust had contacted the Belfast City Hall in November 2009 to ask the Right Honourable Lord Mayor Pat Convery to sponsor the event on behalf of the community of Northern Ireland, unfortunately he was unable to let us have a venue at The City Hall, the Trust was contacted by Chris Lyttle of the East Belfast Alliance Party to say he would try and sponsor the event for us at the Northern Ireland Assembly, when Chris contacted us it was like an answer to our prayers, but he also could not get the venue.The Alliance Party has always been a supporter of The Cavan Tommy Hoey Trust and we are very pleased to have last years Lord Mayor The Honourable Councillor Naomi Long East Belfast Member of Parliament and Patron of The Cavan Tommy Hoey Trust the trust looks on the 28th February 2011 as one of the most important day in its diary, just as the rest of the world holds Rare Disease Day,  it is a day when patients and their famlies all over the world remember and unite to raise awareness of the nightmare of  rare diseases and the impact it has on the family unit.Northern Ireland held its first ever event last year it was held at the Belfast City Hall on th 26th as the 28th was a sunday. The Cavan Tommy Hoey Trust was set up by the grand parents of little CavanTommy Hoey, after their little grandson was diagnosed with XLP only 100 Famlies in the world has the gene, he was also diagnosed with EBVHLH,another Rare Disease on returning from Bristols Children Teaching Hospital Terry and Maureen Hoey decided to set up the Trust, they also  contacted MLAs, hospitals and doctors to see if they had heard of Rare Diseases and to see just what was at hand for the children of Northern Ireland, also to see if our medical service could cope and diagnose Rare Diseases. The outcome was shocking no one had heard of Rare Diseases or how to diagnose them. Terry and Maureen contacted  the First Minster and the Deputy First Minister to Alert them of the position, they also alerted the Chief Medical Officer of Northern Ireland regarding XLPand EBVHLH .Terry and Maureen then set  up The Cavan Tommy Hoey Trust to try to raise awareness to the media, news and television, also setting up Blog sites all over the net to attempt to get information out regarding Rare Diseases.They both found it very hard work as both Terry and Maureen are ill themselves and trying to raise funds for the Trust is not an easy job, but they know only to well just what the effects are on all the family when something like this comes to your door, you will never know until you are walking in the shoes of a family that has Rare Disease. Terry and Maureen agreed they would raise funds for Cavan and for the Children in Northern Ireland as the need is great they have worked night and day even when news regarding Cavan was not good, they worked to get collection boxes into shops to raise funds to help with the fight against Rare Disease even though they had many doors closed in their face they had to keep going and explaining to everone they came in contact with about the nightmare of Rare Disease. Rare Disease Day was the cherry on the cake at last Terry and Maureen had been able to get the profile of rare disease out there, they contacted every single person in our Northern Ireland Parties and every high ranking person in the local goverment departments and leaders of local business community making sure that everyone knew of the nightmare of rare diseases and its effect on famlies, and inviting them to rare disease day at the Belfast City Hall, It was then we were contacted by UK Rare Disease asking us to hold a joint event as they were also holding an event at the Northern Ireland Assembly, The Cavan Tommy Hoey Trust ask Debbie Hoey Cavan's Mum and Cavan to attend both events, Terry and Maureen felt it would be a great platform for famlies and patients to meet and to show that Northern Ireland Cares about rare diseases.The Cavan Tommy Hoey Trust was shocked to hear that the event being planned by the assembly this year on the 3rd of March 2011 and sponsored by Sinn Fein. They did not make any sort of contact with The Cavan Tommy Hoey Trust  you only have to google The Cavan Tommy Hoey Trust to see just what time has been spent raising the profile of Rare Disease and the work the Trust has undertaken in the last year.Terry and Maureen look on this as a great snub to The Cavan Tommy Hoey Trust and to the patients and famlies that are going through the nightmare of Rare Diseases, and a snub to all the hard work that has been carried out by The Cavan Tommy Hoey Trust not to involve them in the planning of the reception for UK Rare Disease, and  to ignore  a Northern Ireland Patient Group. We are very pleased that the profile is again being raised at a high level but its just not about the nice things like coffee and tea its about the children who are fighting Rare Diseases in our wards all over the UK and Ireland, some children in hospital for weeks on end and famlies waitng on a diagnosis of a disease that man has never found a cure for, or tell the life term of the child with Rare Disease, it is only Patient groups that can tell just what is needed, Rare Disease is not waiting on meetings or receptions, Rare Disease is happening now and it is effecting our children, if The Cavan Tommy Hoey Trust  is to outspoken for some people so be it. Children like Cavan need a voice and need all the support they can get no matter where it comes from. Rare Diseases have no borders Rare Diseases is not so Rare Please Support The Cavan Tommy Hoey Trust and Belfast Rare Disease Day On the 28 February 2011

Terry Hoey
President  The Cavan Tommy Hoey Trust
86 Palmerston Road
Sydenham
Belfast
Northern Ireland
Co Antrim
email thetrustees@the-cavan-tommy-hoey-trust.org.uk

One year on for little Ellas Mum

2010 has found me enduring my first full year without my darling little Ella physically by my side. Although the pain of losing her appears to be sometimes more manageable, it is still very much unbearable when I face the reality, daily, that my life goes own and hers lives in my heart…

It has meant re-living for the first time the last few months of Ella’s short life. Each day etched in my memory… each bringing back its load of charged emotions...

2010 was the year of the Vancouver Olympics... The very reason I found myself moving to the west coast 5 years ago... A time which was meant for celebrations... A time which caused more pain than pleasure... because my heart was no where near festive... And seeing young babies all Canadianized only confirmed what Ella and I were not to experience...

It brought a dreaded first angel anniversary... And a second memorial birthday… Both, as warned by my veteran angel moms, were not as sad as the anticipation of each. Coupling the events with fundraisers kept me focused and busy enough that the moments were not only bearable but somewhat enjoyable… though the days before and after were still very tough to get through…

2010 has also seen me fail at more attempts to become a mom once again… And it has allowed the formal confirmation that Ella had a genetically-linked illness transmitted from me to her… I know what you are thinking… Those failures may have been my angel’s way of protecting her maman… but it does not make me feel any better…

With 2010 came the difficult realization of one more failure…. That of my relationship to Ella’s dad… And with it came the decision to finally put myself first, and separate… hoping Ella would understand...

2010 has brought its share of tears, from me and from Ella’s loved ones… but it also has brought laughter… At the very thought of the tricks that she keeps playing on everyone…

Unfortunately, 2010 uncovered more news of illness… And though I remain healthy, someone I love with all my heart is not so blessed… And just like Ella’s illness, this is they type of illness you hope you can beat… And so, we hope…

And yet... 2010 has been a good year…

It has found me become an advocate for families facing the disease that took Ella from me…

It meant a successful year back at work, full-time – after being away for nearly 18 months altogether rom the moment I went on early medical leave to the time I took to try to mend my heart…

In 2010, finally, came the launch of Everyone Loves Little Angels’ brand, a precious gift of talent from my friend Sophia Szeto…

2010 not only brought a confirmed diagnosis, it became the stepping stone for more medical analysis and, more importantly, a draft to an article to be published which will shed light and educate the medical community about PVNH...

It has culminated in over $11,000 raised in 21 months of fundraising for BC Children’s Hospital… And another $1,600 for Everyone Loves Little Angels… In addition to the couple of thousand dollars for Canuck Place, Children’s Miracle Network and Make-A-Wish Foundation collectively through various other activities…

With 2010 came the official first act of ELLA’s Teddy Program where super huggable teddy bears and glass angels were offered to parents who lost a child…

It also has brought me several times back to Montréal to be closer to my family…

2010 marks the first time I received a scholarship from CORD to attend a rare disease conference as the founder of Everyone Loves Little Angels and the PVNH support group…
And my first Action Day on Parliament Hill...

And among the best that came out of 2010 were the friendships, both old and new… Friendships that stand the test of time. Friendship that pick up where they were lost at sea anywhere from 20 to 30 years ago - and new friendships based on the strongest bonds… the love of a parent… the commonality of a rare illness…

So here comes 2011… So long 2010…

And aside from wishing my family and my friends nothing but good health, I am making exception this year and breaking tradition - wishing something for me… A good donor with a special egg… Just one… that takes… And for Ella… enough kind souls to join together to offer a Make-A-Wish in her honour by the time her 3rd memorial birthday comes…

ELLA - Everyone Loves Little Angels

Belfast Rare Disease Day 2011

It is Rare Disease Day # 2 for Northern Ireland, after the great sucess of last years Rare Disease Day Belfast is showing the world once more it cares about their children and rare diseases. The gates are open and Northern Ireland has seen groups who want to be involved ,The Cavan Tommy Hoey Trust Ireland has lead the fight against the nightmare of rare diseases in raising funds and bringing about awareness. 2009 has been a year of ups and downs for Cavan, our little grandson who has become the name and face of rare diseases. Cavan is still showing the world his true grit in the fight against rare disease he shows just what it is to fight something as big as rare disease, he cares about his fellow human being and still has the time to ask you how you are feeling,this little boy is so very brave just like all the other little children all over the world fighting rare diseases, they are showing us all and shouting out loud we are here and we have rights too,the need for funding rare disease is urgent and is needed now, the necessity for research is needed and needed now, the need for more information and the need is now,Rare Disease needs funding and it needs it now, Belfast is known all over the world  for its peace process, it has lead the way in understanding and the meaning of talking. Northern Ireland must now lead the way in showing the world just how much we care about rare disease, we must lead the world by getting our greatest asset Queens Universtisty  involved in the search for cures against rare diseases, we must lead the way as we have have in the past. We have some of the greatest people in Northern Ireland who are world leaders in research, we just need them to come forward in the fight against Rare Disease.The Cavan Tommy Hoey Trust knows that Northern Ireland could make the difference in the fight against rare diseases in leading the way for the rest of the world, and the united kindom, in patient care and family support the need is great, and the need is now. The Cavan Tommy Hoey Trust  pleads to the people of Northern Ireland to show the rest of the world and the united kindom  we care about Children with Rare Diseases, "Why because we know we can do this and the need is great"