Amelia-Mae’s fight against neuroblastomaMillie’s mum Angela said, “Our beautiful gentle daughter is fighting for her life. On her second birthday, just two days before she was diagnosed with neuroblastoma, Amelia-Mae told us she wanted her party guests to be two kittens, a rabbit and a hamster. Please give Amelia-Mae a chance of life by making a donation, help her by fundraising, or by sharing her story with everyone you know. The more people we can reach the more chance we have of meeting our £250,000 target and getting Amelia to the United States for treatment. We can’t do this without you! I ask everyone who reads this to do whatever they can to give our baby the chance to grow up.” Proud parents Angela and Stewart Davies welcomed their beautiful baby girl Amelia-Mae Olwen Davies into the world on the 8th September 2010 at the Countess of Chester Hospital. Although Amelia-Mae was born 5 weeks prematurely she weighed in a healthy 6lb 9oz. Angela and Stewart felt Amelia-Mae was a miracle baby, as Angela had been told 8 years ago that following two ectopic pregnancies it was unlikely that she would be able to  have any more children. Baby Amelia-Mae spent the first seven days of her life in special care baby unit as she was jaundiced. Doctors found that Amelia-Mae had an atrial septal defect, more commonly known as a hole in the heart, a pulmonary stenosis (narrowing of the artery) and a faulty pulmonary heart valve. This meant the valve was stuck open, rather than opening and closing like a normal healthy heart valve, to filter the blood. Amelia-Mae had regular trips to hospital for check-ups and heart monitoring, and it was decided that heart surgery would be held off until Amelia-Mae’s heart was a little more mature. During the summer 2012, Amelia-Mae started sleeping more and eating less and less, even refusing her favourite cherry tomatoes and grapes. Her parents also noticed bruising on her legs, arms and even her back. This was very unusual because Amelia is a very gentle soul who likes to smell flowers and hug trees rather than climbing them. In June 2012 a local doctors who diagnosed a virus and suggested paracetamol. There was no improvement so another visit led to a diagnosis of an ear infection and a prescription of antibiotics. After a few days Amelia-Mae was even worse, not eating and or sleeping much. This time Angela and Stewart took their baby to Accident and Emergency where once again a virus was diagnosed. Angela and Stewart took Amelia-Mae for a sea side holiday on the hope that the sea air would help, and even visited another hospital when they were away. Amelia-Mae was given a clean bill of health. On 10 September 2012, just two days after Amelia-Mae’s second birthday – which she spent in bed because she was so poorly at this point – the family doctor (who has not been at the surgery on previous visits) demanded that Amelia-Mae received a range of tests at the local hospital. Within hours Angela and Stewart’s whole world was turned upside down when they were given the devastating diagnosis that their precious baby girl had cancer. After being transferred by ambulance to Alder Hey Children’s Hospital, Liverpool, on September 11th 2012 baby Amelia-Mae was diagnosed with stage 4 neuroblastoma. She had a large tumour in her abdomen and more tumours in her liver, glands and bones including her skull and bone marrow. Poor Amelia-Mae was highly anaemic and her blood was septic. Angela and Stewart were desperate at this point as Amelia-Mae was so very weak and had not eaten for over a month and they thought they were going to lose their precious baby. Within a week Amelia had undergone four procedures under anaesthetic which included bone and marrow extractions, scans including MIGB, and MRI, being fitted with a central line and an abdominal peg fitment. Amelia was given rapid COJEC chemotherapy (so called after the names of the chemotherapy drugs used), 80 days of intense chemotherapy followed by scans which showed that she still had significant disease in the main tumour in her abdomen, liver, glands and bones, so she was prescribed TVD (topotecan, vincristine and doxorubicin) chemotherapy over 2 months. This aggressive treatment really took its toll on baby Amelia but finally in February 2013 she was ready for surgery to remove the main tumour in her abdomen. The surgery lasted for 10 hours before she was transferred into intensive care, and after 4 weeks was allowed home again. The next treatment planned for Amelia was stem cell transplant in March, but unfortunately this procedure has been rescheduled twice as she has been so poorly. Amelia has been readmitted to hospital so that she can have a week of intravenous feeding. Amelia’s bowel is working too fast which means she is not absorbing food and is losing weight again.   The long term survival rate for children with high risk neuroblastoma remains at less than 40%, which is around half the average survival rate for childhood cancers. To give Amelia-Mae the best chance of beating neuroblastoma for good, her parents want her to receive immunotherapy treatment. The most successful treatment uses the antibody ch14-18, and cytokines IL-2 and GM-CSF, trialled in America and shown by the Children’s Oncology Group to increase children’s chance of survival by 20%. This immunotherapy treatment will help stimulate Amelia-Mae’s immune system so that her own body should be able to recognise and attack the neuroblastoma if it was to return. This is the main worry with this deadly disease, where the relapse rates are high. The treatment we hope Amelia-Mae will receive in the United States is not available in the same format in the UK, where anti-GD2 and IL2, or just anti-GD2 alone, are given as part of a randomised trial. The proposed treatment and associated costs of over £250,000 will not be funded by the NHS which is why Amelia-Mae desperately needs your help. Millie’s mum Angela said, “Our beautiful gentle daughter is fighting for her life. On her second birthday, just two days before she was diagnosed with neuroblastoma, Amelia-Mae told us she wanted her party guests to be two kittens, a rabbit and a hamster. She adores her big brother Carl, and all we hope for our baby is that she is given the opportunity to beat this terrible disease and have the best chance of survival. Please give Amelia-Mae a chance of life by making a donation, help her by fundraising, or by sharing her story with everyone you know. The more people we can reach the more chance we have of meeting our ambitious target and getting Amelia to America for treatment. We can’t do this without you! I ask everyone who reads this to do whatever they can to give our baby the chance to grow up.”If you want to help by organising your own fundraising event for Millie, please contact Nikki or Claire at the Neuroblastoma Alliance on 020 8202 9065, or email us at info@nballiance.org.uk to find out more.Please give as much as you can afford to help baby Millie and children like her. Every donation, not matter how small, will make a difference

 

 

 

 

 

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