Our little ‘Smyla Myla’ has so little time left to live
For David and Charlene Campbell becoming parents was the most wonderful experience of their lives.
The couple was over the moon when little ‘Smyla Myla’ entered the world a year ago this week.
But tragically their joy quickly turned to utter devastation when they discovered their precious daughter had terminal cancer.
Myla was just two months old when she was diagnosed with a brain tumour.
At first the Campbells thought her condition was curable, however, their worst fears were realised when a biopsy revealed Myla had a rare aggressive malignant tumour called ATRT (atypical teratoid rhabdoid tumours).
There are between 40-50 children in the world who have ATRT. Myla is the only one in the UK.
It has a very low survival rate with the life expectancy being between six to 17 months.
Since being diagnosed, the beaming blue-eyed girl has undergone a series of gruelling operations and intense chemotherapy in a bid to fight off the disease.
And while the procedures have managed to prolong Myla’s life, they have not alleviated her condition forcing her parents to make the heart-breaking decision to stop treatment so she could spend the rest of her short life at home.
A few weeks on and the remarkably resilient family gathered at the Campbell home in Portadown on Tuesday to celebrate Myla’s first birthday.
It was a bittersweet celebration, but one her devoted father David said they would cherish for their rest of their lives.
He told the Belfast Telegraph both he and his wife were still coming to terms with the hard road ahead, but wanted to share their story in a bid to raise awareness of the fatal disease. They also hope to help other families in similar circumstances as well as alert the rest of Northern Ireland to the vital work staff at the Royal Victoria Hospital do for thousands of families every day.
David said: “When you think of cancer, you generally think it happens in older people. You are aware some children and young people get it but you never think it can affect babies in such as way.
“At the hospital there are many babies with different types of tumours. But we have the only baby with a rare cancer and no real treatment.
“But the hospital, doctors and staff have been great with us. They have done everything they could.”
The aircraft worker, who works in Saudi Arabia, has spent the past year researching his daughter’s condition to try and find the best possible treatment.
Both he and Charlene have been in contact with doctors at St Jude’s Hospital in the US which specialises in brain tumours as well as doctors in Spain and Australia to see if they could operate, but her condition was too far gone.
They also allowed Myla to take part in experimental treatment to see if it would shrink her tumour, but it failed.
And, while her tiny body has endured months of rigorous chemotherapy she has remained buoyant earning her the nickname ‘Smyla Myla’ by her family.
But last week in a turn for the worse the disease took hold and Myla can no longer open her eyes because of optic nerve pressure.
The toll has also affected her energy levels and her ability to smile.
“We have barely seen a smile in what feels like a very long time,” Charlene said.
“We are so utterly gutted and pained by all of this and the reality of seeing this disease in action is making us realise than apart from a miracle happening, this is the beginning of the horrible road to the end.
“It is a very frightening thought what we have to deal with in the forthcoming weeks or months and wondering what Myla is going to have to endure.
“It is just so heartbreaking looking at her and wondering why she can’t be sitting up enjoying a happy healthy life, playing with her toys and only dealing with an obstacle such as learning to walk or crawl, not something as horrible as cancer.”