When Rory Harty’s parents noticed they could no longer fasten his nappies, they assumed he just needed a bigger size.
But alarm bells started to ring when the two-year-old became sniffly and developed a persistent cough, prompting them to take him to a GP.
The doctor believed the tot was suffering from bronchitis, an inflammation of the airways which usually goes away on its own.
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But, a few days later, worried parents Rachael and Andrew noticed Rory had a swollen belly and appeared extremely fatigued.
As concerns grew, Rachael, 33, decided to take the youngster to A&E. She thought Rory may have been suffering from a chest infection and they would be sent home with antibiotics.
But, alarmed by how ill Rory looked, a receptionist alerted a doctor to his deteriorating condition and the family were rushed to an adult resuscitation area.
As his oxygen levels continued to drop, Rory was then transferred to a hospital in Preston where he was placed on a nebuliser, medics still believing he had a chest infection.
That’s where a doctor noticed Rory’s swollen belly, saying the family needed to go to Manchester Children’s Hospital for an operation to remove fluid from his lungs.
Rachael and Andrew were waiting anxiously when an oncologist came into the room alongside a Macmillan nurse. That’s when they knew Rory had cancer.
“I said to the consultant, ‘He has leukaemia, hasn’t he?’” EasyJet cabin manager Rachael told the Manchester Evening News.
“When the doctor said his bloated belly could have been caused by an enlarged spleen. I Googled it, I’m not going to lie.
“As I went through the lists, on the last page it said it might be leukaemia. I thought, 'no, I’m his mum. I would know if he was poorly. I would know if he had leukaemia'.
“With Rory, there was no point in our heads that we thought he wasn’t going to get better from it.
“It was the most common type of childhood cancer, they had all these treatments and he was fit and young enough. We never thought for one second he wouldn’t get better or the treatment wouldn’t work for him.”
The day after Rory’s operation to remove fluid on his lung, the tot began a six-week course of chemotherapy for t-cell acute lymphoblastic leukaemia. His total treatment was set to last around three years.
But tragically, as Rory had unusual symptoms and his cancer behaved differently to others, his body was not responding to any type of treatment.
Just 12 weeks after his diagnosis, Rory, fondly nicknamed ‘Rory Tiger’, passed away in hospital in December 2021.
“The first six weeks they wanted to get rid of the disease,” Rachael added.
“Rory’s disease hadn’t gone, it had increased. He didn’t respond to any treatment. A lot of children go home after their treatment and come back in as outpatients. We didn’t get him home. He just wasn’t getting better.”
Rachael, who lives in Chorley with husband 37-year-old Andrew, a prison court custody officer, and son Noah, six, can recall the moment she knew Rory was really unwell.
“A few days after [his initial appointment], he hadn’t really got any better,” she said. “He had an afternoon nap and he was normally really good after his nap; he had a routine. He would get his dummy off the fireplace, go lie on the settee then he would pay with his big brother.
“But one day, he just lay there with his dummy in and he wouldn’t move. He just looked at me. I noticed his belly was sucking into his ribs; I had never seen his belly move like that before.
“The symptoms are so easily put down to child development – all kids get coughs and colds and all kids’ bellies grow a bit.”
Rachael says she knew Rory had cancer the moment she spotted the Macmillan nurse come into the waiting room.
“When the consultant came in, the nurse came in and I saw her Macmillan badge...at this point, I didn’t really know what oncology meant, but I knew what Macmillan were.
“I had this gut-niggling feeling that I couldn’t shift – that I knew it was something worse than we thought it might have been.”
Throughout Rory’s illness, the family were supported by Derian House, a charity based in Chorley, which provides respite and end-of-life care to more than 400 babies, children and young people across the north west.
The couple have since created The Tiger Box, also known as Rory’s Box, as a legacy to their beloved son.
Containing a blanket, a heat pack, a storybook as well as ink to create precious handprints – the Tiger Box is handed out to bereaved parents whose child is laying at rest in one of the hospice’s special cold bedrooms, known as Sunflower Rooms.
“Whilst Rory rested in the sunflower rooms at Derian House Children’s Hospice, I felt fortunate that we had time to get everything we needed to stay in there for a long period of time,” Rachael said.
“Fortunately, we live five minutes away and, after feeling how cold the room got, I headed home for a blanket, a hot water bottle, books, Rory’s special toys, and Rory’s Christmas presents.
“But it made me realise that not all families are close by. I couldn't shake from my head that other families would have to choose to spend a long period away from their child to collect items or go without them. This is where the idea of Rory’s Box began.
“Rory’s Tiger Box is there for families at a time when they need someone else to think for them. The box provides families with home comforts and necessary items to withstand the cold rooms, without the need to leave to collect things from home.”
Rory’s Tiger Box also contains a lavender candle, pillow spray, hand cream, a family tree poster, as well as seeds to plant forget-me-nots, and a bereavement book titled Rory-saurus – written by Rachael and Andrew for Rory and Noah.
The box has been handed out to families for more than two years and the pair have no plans to stop their work. They have also created the Dino Box, which is given to all independent funeral homes in Chorley.
“Rory’s Box is a way to continue Rory's name, his face, and his legacy,” Rachael continued.
“It was an idea and dream that was thought up out of deep grief, sorrow and pain. We purchase the items ourselves through money donated via our Just Giving page. We create the boxes in Rory's bedroom, and Noah has a big hand in this. Any wonky logos are extra special, because that's Rory’s big brother’s work.
“We know how incredible our little boy was, he fills us with pride every second of the day – both our boys do. Rory’s Box is a way of him living on and showing the world the superstar that he always will be.
”Rory was only with us physically for two years, the reason our hearts are forever broken, but he will do more good in his life and help more people in his life than most people ever will.”
Burnley mother Lauren Macaree received a Rory’s Tiger Box when her son Jake used the Sunflower Room at Derian House in Chorley in 2022.
Jake Macaree was born with a rare genetic condition that affects only one in 100,000 children and passed away aged two.
“I remember thinking at the time how incredible that a family who has gone through the same pain that we were going through has done something so amazing to support others,” said Lauren.
“And what an amazing legacy for Rory. The gifts they gave really made a difference. They came from one angel baby family to another. I can’t thank them enough.”
Lucy Maxwell, family support worker at Derian House, said: “Rory’s Box has been a huge comfort to many of our families during what is the most difficult of times. The fact that the boxes come from one family to another who have had the same experience is incredibly special.
“The Sunflower Rooms enable parents to spend precious time with their child after they have passed away, giving them more time to say goodbye, and to have these extra items means so much to them.”
