The Voice of Spalding and South Holland
A Crowland family are fund-raising so they can be beside their eight-month-old with an extremely rare disease as he undergoes vital surgery to disconnect half his brain.
Oscar Wright, who has Sturge Weber Syndrome, is currently in Great Ormond Street Hospital in London.
It’s estimated that only between one in 20,000 to 50,000 have the genetic mutation, though symptoms can vary widely.
Oscar was born with the syndrome and diagnosed at just nine weeks old after suffering jaundice.
He also developed seizures and has a left sided hemipledgia which means he has a facial droop and cannot use his left hand or leg.
More recently he’s suffered from extremely severe epilepsy due to the right side of his brain being affected.
After being admitted to Great Ormond Street for tests he’s now back in London for the operation due to take place this week.
Recently he has had several long episodes which have resulted in him being placed in intensive care.
It’s also caused bleeding in his good side of the brain.
That’s led to the current need for a hemispherectomy operation. It’s a rare operation where half of the brain is removed, disconnected or disabled.
Oscar’s nanna Gemma Niemiro says the hemispherectomy is the family’s only hope.
“Oscar is the bravest strongest child I have ever met,” Gemma said. “He is laid back and loving and does not bat an eyelid even when things are tough.
“He is a big boy for his age which helps but he still is only a baby so cannot tell you how he feels.
“The whole family are worried beyond words about him and this will be the longest day of our lives but we know it has to happen.
“Oscar is the centre of our very close family and we all won’t settle until he is home.”
Due to current COVID-19 restrictions mum Bethanie Rollings and dad Tim Wright can’t stay with him permanently and can only go in one parent one at a time.
Concerned about the financial impact of the hotel costs in London, Bethanie’s mum Gemma has set up the Go Fund Me page, Oscar’s Army.
She said: “We don’t know how long he will need to be in hospital for, and restrictions because of COVID threat are still in place.
“As you can imagine, the family and Oscar have a very scary and long journey ahead of them.
“They are going to need a lot of support and equipment to help them.”
