We know she is dying, but we still believe in miracles: Heartbreaking story of a little girl's last Christmas- and the amazing courage of parents determined to fight brain tumour that is killing her Parents of Amelia Saunders, 4, hope her story will inspire people to donate money to brain tumour research Parents said they sympathise with Sally Roberts, mother of Neon, 7Amelia's tumour is inoperable and medical trials in the U.S failed to help
22:31 GMT, 29 December 2012
22:32 GMT, 29 December 2012
Little star: Four-year-old Amelia Saunders has an inoperable brain tumour. After spending a heartbreaking last Christmas with her family, Amelia's parents hope her story can inspire people to donate to brain tumour research
Four-year-old Amelia is a firm believer in fairy tales. Her parents Richard and Chantal Saunders believe in miracles, too. They knew as they spent a quiet, family Christmas together, watching their beloved daughter unwrap her presents under the tree, that it would be her last.
But they believe their beautiful child, who is dying of an inoperable brain tumour, will inspire people to donate money to brain cancer research – and that, one day, the funds will help develop a cure for the disease that is robbing them of their little girl.
Amelia’s tragic plight parallels the case of seven-year-old Neon Roberts, whose parents Sally and Ben have been engaged in a High Court battle over whether their son should undergo radiotherapy.
But there is one significant difference. In Neon’s case, there is a choice, a chance of life – nine days ago, a judge ruled that he should be given radiotherapy, against his mother’s wishes. For many – including Amelia – the diagnosis of a brain tumour is a definite death sentence.
One worrying fact that the Neon Roberts case has highlighted, and one which Richard and Chantal have discovered, is the shocking lack of treatment options for brain tumours – fuelled in part by a lack of research.
Only about 750,000 of the 521 million spent annually on cancer research is used to investigate brain tumours, despite the fact that they are the biggest cancer killer of children and adults under 40.
Richard feels incapable of criticising any parent faced with the terrible dilemma Neon’s parents had to contend with. But it is clear that he would opt for any treatment that could save his daughter, or at least ensure she lives a little longer.
Like Sally Roberts, he is appalled by the side effects of current medical treatments. But he and wife Chantal are adamant they would never opt for controversial and unproven alternative therapies if conventional medical science had offered them hope.
‘I would struggle to justify trying some alternative therapy to surgery if radiotherapy provided even a chance,’ he says.
‘Radiotherapy is brutal – but it has to be brutal to kill off the cancer.’
Family: Amelia pictured with parents Richard and Chantal, and sister Charlotte. Mr Saunders said he gets 'very frustrated' at the perception that nothing can be done to stop cancers like his daughter's
Amelia was only three-and-a-half when she was diagnosed, first at Oxford’s John Radcliffe Hospital.
‘The hospital’s policy is not to perform radiotherapy on children who are under the age of five because their brains are not sufficiently developed,’ Richard says at the family home in Reading.
After the shock of the diagnosis, the family threw themselves into fundraising – raising enough money to take Amelia to Texas for clinical trials which initially seemed to work, but then failed.
‘We hoped it might have helped Amelia live until she was old enough to have radiotherapy but . . . ’ Richard’s voice breaks under the emotional strain. Even when the treatment failed, money still poured in.
The couple will now donate it to hospice services and much-needed clinical research.
So strong: Amelia pictured in hospital in February. The child was only three-and-a-half when she was first diagnosed. She was taken to Texas for clinical trials which initially worked but then failed
Richard, who works in IT sales, adds: ‘There seems to be a perception that nothing can be done with cancers like Amelia’s so there is no point putting money into research. We get very frustrated with that.
‘Nowadays, for example, there is a very high survival rate for leukaemia – but 30 or 40 years ago you would die from it. Now they have found the right combination of drugs to treat it. They were able to do that because hundreds of millions of pounds was put into research.’
Any breakthrough on brain-tumour treatment will be too late for Amelia. ‘It is a horrendous time for us,’ adds Richard. ‘We have done so many things to try to keep ourselves going this year. But it’s hard to know what to say now. Amelia is sleeping more and more, which is not a good sign. We think she has a few weeks left.’
All the little girl really wants now is to spend all her time with her mother – and Chantal rarely leaves her side.
Born in June 2008, Amelia was Richard and Chantal’s eagerly awaited first baby. She has her father’s bright brown eyes, her mother’s cheeky smile and fine, fair wavy hair.
Two years later, Amelia was thrilled when they had another baby, her little sister Charlotte. ‘Amelia is obsessed with babies,’ says Richard. ‘She is a very loving little girl, always bright, bubbly and chatty. She is very attached to her sister although they are like chalk and cheese. Charlotte is a little bruiser and Amelia is much more delicate. We tried taking her to gymnastics and ballet – but what she really loved was dressing up as a princess.’
It was only in September 2011 – when Amelia began attending Crosfields nursery school near Reading – that their world was turned upside down. Her teachers noticed that she was not behaving quite like the other children.
‘She loved nursery but she started bumping into things,’ says Richard. ‘And she would withdraw from things like arts and crafts that kids normally love to do.’ They took Amelia to their GP but it was almost three months before she was referred to hospital.
‘I do not blame the doctor for not recognising Amelia’s condition because the chance of her having a brain tumour of this type is one in 100,000,’ says Richard. ‘That doctor will probably never see a case like Amelia’s again.’
It was not until the end of last January that Amelia first saw the specialists. ‘We went through a lot of hoops to get her that referral to the hospital,’ Richard says. ‘And then we went from being normal to utter hell in one day. A MRI scan showed a massive tumour inside her brain.’
Public: The case of seven-year-old Neon Roberts has highlighted some of the serious side effects of treatment and the lack of side effects, according to Amelia's parents
Amelia has a rare form of tumour in the middle of her brain, known as Diffuse Intrinsic Pontine Glioma. It is both highly aggressive and extremely difficult to treat. Symptoms include problems controlling eye movement, facial expressions and speech, and weakness in the arms and legs.
Amelia was given just a few weeks to live. Paralysed by shock and grief, it was the couple’s close network of friends, family, neighbours and workmates who stepped in. They began raising money to send the family away on a last, dream holiday together.
They soon had a fund of 15,000 – far more than they needed for a holiday. Richard and Chantal decided to fulfil Amelia’s dream of being a real princess for a day. They hired a castle, invited her school friends and held a fairytale party.
Difficult: Amelia's parents sympathised with Sally Roberts, who has opposed treatment on her son Neon in court favouring alternative treatments
‘It was a beautiful, clear February evening,’ Richard says. ‘Not a cloud in the sky. We let off balloons and watched them float so high over the horizon like the beginning of the biggest journey we would ever take.’
Waking up in the master bedroom of the castle the following morning, Richard knew his efforts to help his daughter could not stop there.
The family had read about pioneering medical treatment in America and decided to try to raise more money to take Amelia to Houston for the clinical trials. Richard immediately set to work, using his professional IT skills to create a fundraising website called Amelia’s Miracle.
Within 12 weeks they had managed to raise 200,000. In America, Amelia seemed to respond well to treatment and the family came home. By September, she had exceeded all her doctor’s expectations and was well enough to start school. She loved reading and music lessons.
For the most part, Chantal, a full-time mother, lets Richard tell the story of their battle – but she wanted to share one treasured memory. ‘Amelia went into school every day and she did very well,’ says Chantal, her eyes glittering with pride.
‘She loved singing all the Nativity songs. She played a star in the Christmas play. She was gold, with tinsel around her head.’
But Amelia’s condition was deteriorating. Just a fortnight ago, she bravely said goodbye to her school friends for the last time. Everyone knew she would not be returning in the New Year.
‘We have this enormous pot of money left over that we have not used,’ says Richard brightly. ‘We have about 170,000. We want to help the children’s hospice service in Berkshire and give money to brain cancer research.
‘Parents need more support when they are given a diagnosis, they need to know all the options that are available to them – because there are options.’
Even during their daughter’s final days, Richard and Chantal know that they have to remain strong for their children.
‘People often ask us how we cope,’ he says. ‘What choice do we have There is no choice. Do you leave the kids in the car park and walk away from them saying, “I can’t deal with this”
‘Everyone around us has bonded with us – they know that we have tried everything, that we just haven’t given up. Even now we’re not giving up. We know she is going to die but after this we are going to do something that will make a difference.’
As for Amelia, she is persevering, without a whimper of protest, for her mum and dad and little sister.
‘This is a story of hope and of a little girl who showed us all what fighting spirit means,’ says Richard. ‘We had a dream of beating one of the worst cancers known to mankind. We never lost that dream.
‘One day this cancer will be beaten. Maybe not in our lifetime. But one day no more families will be robbed of their happiness. No more children will suffer.
‘If our story can do one thing and one thing alone – if it inspires others to fight cancer too, then Amelia’s life hasn’t been in vain.’
lDonations can be made to the Alexander Devine children’s hospice service: www.alexanderdevine.org.