We were just heartbroken when our boy died but his spirit
Neville Sexton has written a book to keep the memory of his tragic son Craig alive, says Denise Smith
The loss of a child is inconceivable for any parent but for Barbara and Neville Sexton, it was the reality they faced when their six-year-old son Craig, was diagnosed with a terminal and inoperable brain tumour.
On that day, Monday June 26 2006, their contented life in Gorey, Co Wexford was shattered forever. Their only son’s death had been predicted and just four months later Craig lost his battle for life.
Now, five years on, Neville has captured the essence of Craig’s short but remarkable life in his book, ‘Craig: The Boy Who Lives’. The unfathomable loss was still tangible when the author spoke to the SWM about Craig’s heart-rendering story.
Giddy, mischievous and funloving, Craig or ‘Spud’ as his Dad liked to nickname him, was a constant flurry of activity. A witty and mischievous child, Craig’s endearing nature was infectious.
Whether he was bounding through the woods with his Dad or playing tricks on his Nanny; hosing her down on the frontgarden, Craig bewitched everyone he came into contact with.
In June 2006 however, everything changed. Barbara and Neville had begun to notice that Craig’s movements had become awkward and off balance. But it was a trip to the playground that signalled a serious problem “Barbara had taken Craig to the park when he became trapped in a swing; he became dizzy and disorientated and couldn’t lift his head,” the Wexford father recalls.
Concerned for their son, Barbara and Neville went to Tallaght Hospital, where doctors quickly dismissed Craig’s symptoms as hay-fever.
“We knew it was something more serious and we told them no way, we are not going anywhere,” Neville explains.
After a series of tests, a CAT scan was ordered but nothing could have prepared them for the news they received.
“The doctor told us he had a 5cm brain tumour and that he was going to die. I could not believe it, Barbara was inconsolable.”
There was nothing to ease the pain as a leading oncologist estimated Craig had just seven to nine months left to live. “It was a crushing blow, the worst time,” says Neville.
“Maybe it was naivety but I had a fight back in me I believed he could beat the odds I could not accept that he only had seven to nine months to live.”
Craig immediately underwent radiotherapy which would prolong his life but the treatment was very aggressive and Craig was constantly sick.
Family life continued as best it could and Craig’s determined parents refused to surrender to the illness.
“I used to put him to bed every night and I told him to imagine little soldiers beating down his lump, I was convinced he was going to beat it, he was an exceptional child.”
But in the first few weeks of October the disease worsened, forcing the gorgeous six-year-old into a wheelchair when his legs failed. The savage disease continued to ravage the Wexford boy’s body with un-relenting ferocity.
Despite Craig’s immense suffering, his indomitable spirit never relented to the disease, says Neville: “A week before he passed away I was carrying him to the toilet when he said to me ‘Daddy I am going to beat this lump no matter what’, his personality and strength of character was amazing.”
On November 2 Craig died in his parents’ arms. Neville recalls: “Myself and Barbara were with him; I read him his final story about walking to the other side.”
But even in death Neville refused to believe it was the end. “I did not want to believe it, it was too much of a nightmare. It was apocalyptic, it was the end of everything we knew. The moment he passed away I knew there had to be more to it. He had to live on.”
Rebuilding their life has been a very slow and painful process for both the heartbroken parents, but the birth of their now two-yearold son Dean has given the couple solace in their suffering.
For Neville, Craig still lives on, his presence witnessed by Neville himself on several occasions. In the darkest times Craig has reached out to his father and given him comfort.
“He has made me a better person his strength of will and mischievous still lives on. He had such a short life but left such a mark.”
Craig: The Boy Who Lives is available in all good bookshops nationwide now.
Sunday World Magazine