A GRIEVING couple are setting up a charity as a lasting legacy to their baby daughter who died from men-ingitis when she was just 16 days old.
Trish and Jon Page’s lives were ripped apart when their daughter Lucie died from the disease.
Less than 24 hours after her tragic death, they set up a website in her memory called For Lucie, which has already raised more than £15,000 for the charity Meningitis UK.
Overwhelmed by the support, the couple, who have a two-year-old daughter Francesca, have now applied for charitable status to set up a fund in memory of Lucie.
They want to be able to decide how donations are spent and hope to set up a support group for parents in the same situation.
Trish, 42, said: “We didn’t want people spending money on flowers so we set up the website, which also had details of what happened to Lucie on it. I couldn’t face telling the story over and over again.
“Lucie lived for only 16 days and there has to be a purpose to her short life. There has to be something to leave Lucie’s legacy to make it more meaningful.
“If we can help just one family from going through the hell that we have, then Lucie’s life will have meant something.”
Trish is already planning fundraising events and hopes to hold a charity ball later this year. The family hope Lucie’s story will inspire other people to organise events and raise money for the For Lucie fund.
“We have been overwhelmed by the level of support we have received, even people we do not know have donated,” she said.
Lucie Page was born on October 16 but died just 16 days later from a strain of meningitis called group B streptococcus, which is caused by a type of bacteria. The disease is the most common cause of life-threatening infection in newborn babies.
Lucie’s mother, Trish and father Jon, 40, were so devastated by the tragedy that it is only now they have felt able to talk publicly about what happened.
Lucinda Florence Mary was born at Peterborough District Hospital, weighing 7lb 4oz.
She was a happy and contented baby but things changed drastically in the early hours of Sunday, October 31, when Trish woke to feed her.
Trish said: “She was already only waking up for one feed in the night but she didn’t feed as well and she was really out of sorts, which was unusual. I sat with her a while and then I put her down and she was still a bit grizzly but she went to sleep.”
When Trish checked her at 8am, Lucie was hot with a temperature of 39C so they took off her clothes and her temperature dropped immediately.
Because Lucie “just didn’t look right”, the couple took her to Stamford Hospital where she was checked over but doctors couldn’t see anything wrong.
They advised the couple, who had lived in Stamford and Ketton before moving to Witham-on-the-Hill, to take her home but go to Peterborough District Hospital if Lucie still wouldn’t feed.
By 10.30am their worries hadn’t eased so they took Lucie to Peterborough. Nurses checked Lucie’s blood sugar levels which were low so they put a sugar gel sweet on her tongue.
Trish said: “When they did that, that’s when I became worried because there was absolutely no reaction. Her tongue didn’t wiggle or anything. Her eyes looked strange as well, they were really deep and penetrating.”
Lucie was admitted to the paediatric ward where she was hooked up to drips providing antibiotics. At that point doctors said she had a bacterial infection.
Jon’s sister Jacqui Eacott, of Little Casterton Road, Stamford, arrived just as Lucie started having seizures.
The baby was moved to the high dependency part of the ward, where she stopped breathing.
Trish said: “She didn’t look like my baby. She was grey and there were tubes all over her. There wasn’t even a spot to touch her or hold her hand.
“There was quite a lot of confusion at that point about what was going on. We were in the waiting room and we thought she had died. It was a nightmare.”
About 20 minutes later, a doctor said Lucie was breathing on her own but needed to be moved to a specialist unit.
By the time a mobile unit arrived to take Lucie to Leicester Children’s Hospital for more specialist care, it was 8.30pm. Lucie was being hooked up to the machines when it was decided she needed a Cat scan at Peterborough to check for brain damage.
The couple were given the news that there was no sign of brain damage so Jon, Trish, Jacqui and Jon’s father Richard followed the ambulance to Leicester. Trish’s parents Vi and Trevor Hayers, who live in Buckinghamshire, were also kept informed.
While they were on their way, Trish got a call from doctors at Peterborough. A specialist had taken another look at the Cat scan and had spotted signs of brain damage and the ambulance was rerouted to Queen’s Medical Centre in Nottingham, which specialises in neurosurgery for children.
“Until that point everyone had been really positive,” Trish said, “but in the car Jon and I were having conversations about how we could adapt the house for a disabled child.”
By the time the family arrived in Nottingham, it was 5am on Monday, November 1.
Trish said: “I just said to the doctors ‘Can you tell me what’s happening?’ I just wanted to know and they said they thought it was meningitis and they didn’t think there was any brain function. The breathing apparatus was keeping her alive.”
The hospital chaplain christened Lucie and Jon’s parents Richard and Diana and Jacqui’s husband Simon and their two children Alexander and Rebecca arrived at the hospital with Francesca to say their goodbyes.
Francesca was given two teddy bears by the hospital, one to give to her little sister and one to keep.
Trish said: “I explained to Francesca that Lucie was very bad poorly and not just Calpol poorly. She gave her a kiss and put the teddy bear next to her.
“Now she talks about her regularly and sometimes she’ll say something like ‘Lucie was very poorly wasn’t she mummy, don’t be sad’.”
A last test was conducted to make sure there was no brain activity before Jon and Trish spent some time alone with their daughter.
Trish said: “They took all the tubes out and we had a cuddle with her. For me I just wanted it all to stop, it was just horrible. She wasn’t our little girl any more, her spirit was gone.”
Richard was with Jon and Trish as the machines were switched off at 4pm. The couple also donated her heart valves, which can be stored for 10 years.
It wasn’t until after Lucie’s death that a lumber puncture could be performed to find the exact cause. She died from a strain of meningitis called group B streptococcus, which is caused by a type of bacteria and can be checked for during pregnancy.
Since the For Lucie website, www.forlucie.com, was set up it has prompted at least two expectant mothers to request the checks. Trish said: “Meningitis is a disease that can kill in four hours and it is very difficult for the medical profession to diagnose. You hear about the disease and you think of the rash but there wasn’t a rash for Lucie.“
Lucie’s funeral was attended by more than 150 people and was led by the Rev Canon Andrew Hawes. She was buried at the church in Witham-on-the-Hill and Trish and Jon, who works as head of sales at a pharmaceutical company, visit the grave regularly.
They have also become close to midwife Liz Fleming, who has kept in contact with the couple throughout.