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SEBASTIAN IS JUST four, but he has weeks to live.
His family, who live in Ballina, Co Tipperary, want to create happy memories for him, and have decided to bring Christmas forward to this coming Saturday.
They’re asking for people’s help in making the day as special as possible.
The Ray D’Arcy show on RTÉ Radio One heard about Sebastian’s story this week, and got his dad Conor on the phone for an emotional chat about his son.
Conor told Ray D’Arcy:
Sebastian really loves Christmas like any child. It’s his favourite time of the year. He looks forward to it from one end of the year to the other.
Currently, there are snow machines and music sorted for the Christmas event this weekend. But the family are hoping that people with Christmas items – like fake snow or reindeer – could help out.
They are particularly asking for help with transporting Santa, who said he will visit on the day.
Sebastian is a fan of Despicable Me, so the family are also hoping someone might lend them Minion costumes on the day. Sebastian’s brother, Ethan, will be there for the Christmas celebrations.
Getting a diagnosis
Sebastian first started feeling sick in January. His dad said he kept vomiting in the mornings, and complaining of headaches.
“We were in and out of doctors and in and out of hospital a good few times,” said Conor. Sebastian was put on antibiotics and other medication, but “no one knew what was wrong with him”.
Then one weekend Sebastian started squinting at the television. “We thought ‘oh God, he must be needing glasses’,” said his dad. They took him to the optician, who said that there was a pressure build-up behind his eye.
Sebastian was brought to hospital in Limerick for a CT scan, and then taken by ambulance to Temple Street that day. He had an MRI, which “came back not good”, said Conor.
Then came the diagnosis: “They said it was a golf ball-sized thing in the back of his head.”
Sebastian was operated on. “They said that they thought they got everything of the main tumour but from the MRI, it looked like there were secondaries,” said Conor.
The family were happy to see their son moving in the ICU, having feared that he would have been paralysed from the brain surgery.
“It took weeks for him to come back around to himself,” said Conor.
Sebastian started getting better, and was brought home and then put on chemotherapy.
He finished chemotherapy four weeks ago, but around about two or three weeks ago he started to do the “squinty eye thing” again. Doctors at first thought it was dry eyes from the chemotherapy, but after a severe bout of vomiting, it emerged through an MRI scan that the tumour was back.
The MRI scan was “pretty much was as bad as it could be”, said Conor:
Originally they said [he had] months [to live] but then on Monday we met with the team in Crumlin, the team that does radiation therapy, chemotherapy and the neurosurgeon, and they basically told us it’s more like weeks.
Sebastian “wants to get better”, said his dad.
He’s funny – he’s actually quite happy to go to Crumlin and get chemotherapy because he knows it will make him better, even though he hates the place.
Sebastian was saying to me: ‘I’m happy to go daddy, I want to get better, I want to get the medicine to make me better”.
Conor encouraged other parents to look out for the symptoms Sebastian displayed, which can indicate a tumour: early morning vomiting and complaining of headaches.
Christmas Day
People have been incredibly generous to the family – Conor sent texts to friends asking where could he get a Christmas tree in May.
“We came home on Saturday and I found two Christmas trees sitting outside the front door. Real Christmas trees cut down that day, it was unbelievable.”
The Ray D’Arcy Show is “just asking people to go out of their way a little bit and help to create a magical day for Sebastian”.
People can get in touch about donations by emailing ray@rte.ie.
All photos courtesy of Ray D’Arcy Show, RTÉ Radio One.
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why would they actually consider doing it in the first place, !!!!. something doesn’t smell right , !!!.
@Declan Crowley: many of the survivors gave their stories in strict confidence on the basis that their personal information would not be disclosed and that they could not be identified.
@Chin Feeyin: This Story took about 75 years to Drag out from Catholic Church. When a Victim is given excruciating details of sexual abuse to an innocent little child, the Adult giving that information is transported back to that Little Child again, going through feelings of regret, shame, abandonment, telling the details of their Trauma May still Shame them again leaving them in a Vulnerable state, of not wanting others to know about their horrible treatment. But with time they will come to see this needs to be available so that other little children are safe, in coming years. Don’t Lock Away the HURT.!!
@Chin Feeyin: Well I am a survivor and I most certainly did NOT give anyone permission to seal my file. I believe that should be up to each individual survivor and their family’s if their file should be kept sealed and for how long. We in Ireland have a tendency to hide or brush our dirty secrets under the carpet about our past instead of owning it. We never learn from it and continue to make the same mistakes over and over again. We were made give our stories in confidence in front of about 4 judges and a number state solicitors and barristers and all the legal team from the religious order where we suffered the abuse and not one person from the religious order or the abuser had to be present and you were sitting there all by yourself like a criminal. So I am of the view they are not protecting the survivors but are protecting the religious by sealing these files.
It should be what the survivors want. Its their stories , their legacy. Why do they want to seal these records if the government is not hiding information and or covering up for the perpetrators.
@Jean Farrelly: Its not just about the survivors. Their stories are part of our history and history, no matter how brutal, should be preserved and be easily available to all.
Is there something in those records that implicates someone or some group, who would now be more senior in the Civil Service?
Once again the Government shows how much it’s out of touch with the ordinary person. These testimonials were given so the truth could be known. What have FG/FF got too hide other than it’s hits them somewhere along the way and they’re hiding any it for political reasons.
We can not keep hiding the truth, some serious crimes where commited and those responsible must pay. If we are truly a decomocratic society the values the rules of law and common decency.
Why would they even consider doing it. Either some people in high office now has something to hide or the church lobby is still an influence.
OMG. disgraceful move by Government covering up abuse is still the norm it seems
@Marianne: Dont forget FF agreed to pay over half of the compensation to the survivors using Tax payer money. They claimed the Church couldn’t afford to pay it all. What a load of tripe.
@DaMoons: seriously, FF are to blame??!!! The church hasn’t paid much of what it was ordered to. If the Govt hadn’t done something there would have been no restitution for people
Justice delayed is Justice denied !
The state was complicit. No surprise there. Deflect.
When these people come knocking on our doors when it time to get re-elected to their over paid cushy jobs everyone needs to ask serious questions and watch the world squirm when the have no valid answers. There is neither justice or accountability in this country.
The catholic church and Irish government still hand in glove…protecting the upper echelons..shame on all of them..have those children all those years ago not suffered enough..SHAME…SHAME….SHAME on all 166 of you sitting in Leinster house
It’s over a thousand peoples stories and thousands more that received settlements will be named. Maybe some of those people are still dealing with the trauma and shame of what happened to them and are not ready to have their stories on show for the world to see.
@Robbie Clancy: these victims should carry no shame. That belongs entirely to the Church’s and State.
@Robbie Clancy: then allow each individual to determine the availability of their respective testaments/records. Where there’s a will the a way.
@M Bowe: if only it was that easy. Shame is the reason people don’t speak out. It’s a crippling emotion that take years to deal with. And in some cases people never heal from shame. Sexual abuse is so shameful, because tragically the person who should feel the shame of it – the abuser – usually never owns it and the victim then carries it.
@Joey Navinski: 100% agree with this.
@Robbie Clancy: so we should be careful and mindful of not using that word towards victims and inadvertently adding to their trauma. They are all survivors of evil acts by evil people who have been facilitated by the highest echelons of establishment within this State.
So much for transparency. What’s happened, to learning lessons from the past so, the same or similar crimes are not committed in the future..? We can’t analyse properly if we can’t have access to the records. This is a disgraceful proposal, but in keeping with conventional governments tendancy to facilitate strong lobby groups, at the expense of society.
You won’t correct the mistakes of the past, by voting in the same governments, that allowed\facilitated those mistakes\crimes. Please remember this when you exercise your vote. To move away from the past, the first thing we need, is new governance.
Banana Republic of Ireland in full effect, a failed state with a corrupt self proclaimed elite with no morals and shame run by a bunch of corrupt, inept fools, populated by roughly 5 million idiots suffering from Stockholm Syndrome!
What a joke of a country!
@Matt Beaumont: you sumed it up there perfectly there Matt ! Ireland is definitely a banana republic as a nation we are not the brightest ! All this crap about Irish people being the nicest most welcome people is all lies , it’s all false most are two faced and only out for themselves !
@Paul Power: Two Priests Just jailed in Argentina for 40 Years for abusing children.
@ÓDuibhír Abú: and if it was good oul Ireland they would have got two years suspended sentence !!! Joke of a country we are !!!!!
This is nothing more than covering up the crimes committed by the State and the Catholic Church If it was a Jewish problem there would be a worldwide condemnation are Irish women and children ot due the same rights
Who in particular is putting this bill forward. Simply saying the state wants to hide the records is preposterous. I has to have political backing from some individuals within the government and likely external. Where’s the transparancy? Who are these individuals putting forward this bill?
Definitely protecting the guilty rather than the innocent. What have they got to hide, or who have they got to hide. It stinks to high heaven.
Assumption can only be people in high places, doesn’t surprise me.
Those who do not learn from history are doomed to repeat it.
THEY are HIDING the TRUTH CHILDREN WERE FORCED TO DO HARD LABOUR IN INSTITUTIONS AND WERE SENT TO REFORM INSTITUTIONS THEUR SOLICITORS NEVER BACKED SURVIVORS IN ANY REDRESS CASE THEY SIMPY SOUGHT RECORDS TO PROOVE THEY WERE LEFGABLE TO REDRESS AND THIS IS THE TRUTH. WHEN MY SOLICIOTR DIED I WAS NOT EVEN INFORMED OF HER DEATH OR MY RECORDS AND WHILE ALIVE NOT ONCE DID SHE CALL ME PERSONALLY I DID THE WORK LIKE MANY SURVIVORS. I WAS NEVER GIVEN THE VALUABLE TIME AS I WAS CONSTANTLY TOLD WE ARE TOO BUSY AS WE HAVE A FLOOD OF SURVIVORS I THOUGHT AS I WAS INFORMED BY THE RIGHT OF PLACE I CAN ONLY USE THE SOLICITOR I WAS GIVEN I AM NOW WAKING UP TO THE SHEER CORRUPTION WE ARE NOT ALL TAT FAST IN EDUCATION ON WHAT WE ARE INTITLED TO WE WERE STRIPPED NAKED OF ALL RIGHTS TO ALL ASPECTS OF LIKE FROM FAMILY DIGNITY HUMANITY LAW AND HUMAN RIGHTS NO WAGES NO PENSIONS NO HEALTH BUT THE CLERGY CAN CLAIM EVERY SINGLE AREA FOR THEMSELVES WITH THE POOR PLATE AND YET THEY HAVE FAMILIES DIGNITY EMPLOYMENT HOUSING WE ARE STILL NAKED AND WAITING FOR REAL WAGES PENSIONS JUSTICE NO GRAVEY TRAIN THIS TIME THEY CLAIMED ON US TO TAKE 500 DEAL MEANING 100% THEY TOOK THE LOT TO BUILD A STORY OFA HOSPITAL ASA AMORALOBLIGATION TO THE TAXPAYER AND NW THAT BILL ROSE TO 3 BILLION AND MORE
it is a coverup for the people responsible to let them off the hook ,they are others responsible who were never caught ,there are things happening in this country that even after the orpanages they have destroyed the lives of those who were adopted and some in the system seen to it they done things to them that broke them down and often drove them to drugs and even sucide
The very reason this does not smellright is because it is NOT RIGHT type in where ever you like INSTITUTIONAL ABUSE , INDUSTRIAL SCHOOLS , REFORM INSTITUTIONS, RESIDENTIAL SCHOOLS. LIKE THE WORD RESIDENTIAL SCHOOLS THIS TITLE IS ILLEGALLY USED we were not in residential schools we were in INDUSTRIAL SCHOOLS it took Government legislation to change titles in the past when the irish government wanted to keep British institutions that inslaved children open after the British left ireland. The total distruction of their OWN DECLARATION not many years after PROMISNG the FREE STATE that ALL CHILDREN will be treated EQUALLY yes LOCK THEM up and THROW away the KEYS of RESPONSIBILITY to RUNNING and SERVING THE NATION but rather make massive profits for the rich. irish Famiies suffered corrupt historic political abuse and this needs to be investigated. If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