Mission Statement

The Trustees of the Cavan Tommy Hoey Trust (IRELAND) will always remember why the Trust was set up and the reason for its existence. We will

work to enable Cavan Tommy Hoey to have as normal a life as possible we will work to meet his needs in the days and years ahead, we will also work

to help his family Jason, Debs and sister Maeve. Cavan has XLP, HLH, EBV, these are rare diseases and Cavan’s condition may or may not improve.

The Cavan Tommy Hoey Trust (Ireland) will raise funds to help with all his needs, schooling, and his Living Conditions, we will also work to help meet

his needs with disability training,

The Cavan Tommy Hoey Trust (IRELAND) will work with Cavan’s Parents and his sister Meave to help bring about a better way of life for Cavan and

to try and meet his needs as much as possible, while the Trust has funds. The trustees will safeguard the funds and have yearly audits carried out. It

will not at any time let the fund be used for any other purpose than what is stated in this mission statement. The Trustees will be seeking to have The

Cavan Tommy Hoey Trust (IRELAND) Charity Status, this will be done as soon as possible, the trustees have seen the need to also have in this mission

statement its overall aims and objectives of the Cavan Tommy Hoey Trust (IRELAND) :

Overall Aims Objectives

Rare diseases can affect anyone and anyone’s family at any time, just in the way it has affected our son’s family,

when it happens, you  try and live through the nightmare of rare diseases as Cavan’s family have to everyday, Cavan has showed us the true grit and sheer

determination in his battle against XLP,HLH,EBV, we as his grandparents and members of the Trustees of his Trust want to help other families

in the way Cavan is helping others with XLP,HLH,EBV, Cavan’s Diseases are very rare so it means that the doctors have to try lots of different drugs on

him to try and help his progress but they are also learning step by step through Cavan. We have to remember he is only six year old and he has come

through more than any person we know, yet he takes everything that is thrown at him by the diseases and the doctors, with that special smile he has

and his sense of humour he has shown us all just what it means to fight rare disease.

The Trustees of the Trust have observed just how important it is to have your family around you when something like rare disease strikes your family,

and how important it is to keep the family as one unit working together and helping each other to get through the pain. We have seen just how

important it is to have all members of the immediate family living in the same place at this time, when Cavan took ill and had to go to Bristol Children’s

Hospital it meant a drive of some 250 miles away from his home, it also meant that he had to stay in the hospital for at least ten months while he

received treatment, this was a huge problem for his mum, dad and sister on how they would manage to live and also be with Cavan at this time.

How would they manage to keep things going at home how would they be able to work, how would Maeve get to school and who would look after

the animals. All the things you forget about when your child comes down with a rare disease, just like any other parent your thoughts are on your child.

We have seen just how important it is to keep everything going and just how important it is to have counselling and social workers at hand to enable

them to work through the problems that arise when something like this affects your life. We have seen the need for younger members of the family

like Maeve to have space and time to talk over her worries regarding her little brother, and the need for her parents to do the same to gain mental

strength to cope with what is happening to the family and what the future holds for them. We know just how important it was for Maeve and Cavan

to be together at this time, we see how it made our son and his wife stronger to be able to cope with what was happening to them as a family unit. It

also showed just how much they needed each other to enable them to come through this.

Our Aim

The trustees of the Cavan Tommy Hoey Trust (IRELAND) see the need for the family unit to be together at a time like this and the need to have the

family unit  live as close to the treatment centre as possible this is a goal that we would hope to achieve, we have seen the way this works with other

treatment centres and we feel we must make it happen in Northern Ireland. We hope to raise enough funds to enable us to set up a family centre

that will be known as the Cavan Tommy Hoey Trust House. It would exist to meet the needs of families with children who may have to travel to Belfast for

long term treatment, we would hope it would be within the vicinity of our two major hospitals Belfast City Hospital, and the Royal Children’s Hospital.

We would hope to fund the running costs of the unit by means of the Trust. We would hope the Cavan Tommy Hoey Trust House would be a family

orientated house and meet the needs of families who have to stay there. We also see The Cavan Tommy Hoey Trust House as fully independent from

the (NHS) but would work with the (NHS) in assisting with the help of families that are having treatment in any of our two major hospitals The Trust

would also see the need for counselling services and social work services to assist the families at a time when support is vital.

Our Objective

The Cavan Tommy Hoey Trust will meet the needs of Cavan Tommy Hoey and his family. We would also hope to establish a family house in Belfast to

be known as The Cavan Tommy Hoey Trust House to help meet the needs of families with children diagnosed with rare diseases or cancer, to

enable them to live as a family unit, while the child/children under go their treatment. The Cavan Tommy Hoey Trust House would be funded by donations

made by the public and by gift aid, The Cavan Tommy Hoey Trust would envisage any stay at the unit by families to be financed by the Charity also

the running costs of the house to be met by the charity. The Trust would seek to have involvement with both the Belfast City Hospital and the Royal

Victoria Hospital for sick Children in how the Trust could bring about a good working relationship with both Hospitals. The Cavan Tommy Hoey Trust

is a family concern and we have seen the need at first hand with our grandson, we intend to run the Trust as a family based group to meet the needs of

other families that have found themselves in the same position as our family

The Cavan Tommy Hoey Trust (IRELAND)

CaTvHaE n ommy

T R U S T I R E L AND