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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