Army life can be tough at the best of times, but how do you cope as a family if your child is sick with a serious illness? Soldier Paul O’Donovan and his wife Kirsty are doing just that with their five-year-old daughter Lyla, who was diagnosed with a brain tumour more than two years ago. Now, they want to raise awareness and encourage other families to seek help…
THE O’Donovans set up a Facebook page, Lyla’s Journey, posting updates and heart-warming videos of their brave little girl laughing and dancing.
“It’s all about letting people know how we’ve dealt with it and how we can help them,” explained Paul. “Lyla loves singing so we filmed her and put it on YouTube.
“When she saw herself she was over the moon. Then we started the page and the comments came flooding in – I’d say to her ‘look Lyla, these people want to tell you how brave you are’. I’m not her dad anymore; I’m more like an agent!
“We’ve had messages from people who are going through the same thing asking us how we’ve coped.”
Where it began
Paul and Kirsty were stationed in Germany along with their other children when Lyla first became ill at around a year old. “She would be sick and then she’d be fine,” said Paul. “The German hospital tested for cystic fibrosis, lactose intolerance, everything – except a brain tumour.
“I’m not blaming anyone, but when we look back we often ask why no one picked up on it. As a parent, if you know that there’s something wrong don’t just accept it.”
By the time they were posted to Devon, Lyla’s symptoms had worsened with headaches and dizziness. After being repeatedly told by doctors that it was something viral, Kirsty eventually went to A&E in Barnstaple.
“Even then the tests showed that there was nothing wrong, but they kept her in to be on the safe side,” added Paul. “A locum doctor told Kirsty it was important to listen to a mother’s instinct and sent Lyla for an MRI scan in Bristol.
“She had the scan the next day and I stayed at home with our other children.
“Then Kirsty rang me in bits. It was one of those unreal moments in your life – it can’t happen, she’s too young, and you think there’s no cure.
“I was with the 6 Rifles Reserve unit, so the closest welfare support was 5 Rifles in Bulford. I phoned a colour sergeant there and told him that I didn’t know what to do.
“First and foremost, he stopped me from flapping. I phoned my mam in Hartlepool and she came down to look after our other children.”
Lyla needed an emergency operation. The doctors were amazed that she was even walking and talking because of the pressure on her brain. They drained the fluid then gave her steroids to try to reduce the size of the tumour.
“We were told to go home for a couple of weeks so in that time we’d planned to do lots of fun things together – in the back of our minds we knew those memories could turn out to be really important,” said Paul.
“But it didn’t work out like that as the steroids made Lyla angry and violent – it was so hard.”
The consultant was certain that the tumour was too big to remove completely, but they would try to de-bulk it to reduce the pressure. Lyla’s chances of surviving the operation were just 50 per cent and the odds of coming through it the same child were even worse.
“He had to tell us the risks but it was horrendous,” added Paul. “On the morning of the operation putting Lyla to sleep was the hardest thing I’ve ever done. She was in theatre for 15 hours, which felt like months.”
When the surgeon came in after the operation, Paul remembers fearing the worst – but, incredibly, they’d managed to remove the entire tumour. Although Lyla would temporarily lose feeling in her left side, she didn’t need a blood transfusion or a tracheotomy – it was miracle after miracle.
“It was then a case of learning how to do everything again on her own,” said Paul. “She couldn’t walk and she forgot who people were.
“She didn’t know her sisters but over time she went from strength to strength, she just wouldn’t give in.”
Lyla’s recovery has been turbulent but she’s more than proved her fighting spirit. She contracted meningitis, pulled through and she underwent repeated operations in Bristol.
At this point the family were in Chivenor with the Royal Marines and received good support from the welfare officer. But to complicate matters, Paul was due another posting.
“I initially asked to stay in the south west so Lyla could continue her treatment, but the Army advised me to return up north where we had family support so we were posted to Durham and housed in Newcastle,” he explained. “The move caused some problems because things got missed. The investigation into Lyla’s seizures was restarted and the hospital repeated tests. But now we’re in the right place and we’re buying our own home.”
Lyla will need another operation at some point, but in the meantime the family are doing their best to keep up her morale and highlight her progress to the world via Facebook. Paul has continued working with his Reserve unit in the north east, which has been very supportive.
“Most exercises run over weekends so the longest I’m away is a few nights and I can only do the local ones – I still have to give something back,” he said. “The Army has given me time and that’s the main thing. Civvy employers would not have offered that – you may have to take sick leave and then not get paid. No one has ever accused me of taking the mick and I’ve been able to take time for appointments – that’s been really good for us.”
Paul admits to having one eye on the near future as he is currently one year into a two-year posting.
“There are only four hospitals in the UK that can treat Lyla so I’ve filled in the AGAI 108 form to tell the Army that we have a daughter with special needs,” he said. “We just have to wait and see what happens next.”
Paul’s advice to anyone in a similar situation is to take the help that’s offered and not to bottle things up ‘because you’re a soldier’.
He added: “The Army has a good support network and then there are organisations like AFF, SSAFA and RBL that can help you and the whole family.”
Follow Lyla’s story on Facebook at LylasJourney1