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ABOUT AMELIA

Amelia-Grace Cooper was born on 27th October 2001 to her parents Chantel and Karl. She was a curious, vivacious and mischievous toddler who thrived at nursery; making friends with everyone from the babies to the teachers. Everyone who met her would comment on her beautiful eyes, cheeky smile and flowing brown curls which defined her uniqueness. Amelia was equally as enthusiastic at school as she had been at nursery, and quickly made friends at Corpus Christi Primary School.  Here she developed her independence, and before we knew it she was choosing her own outfits, her own friends, and making her own decisions about who she was and her aims in her young life.

We felt that Amelia was different from many children in her age group; with her noticeable zest for life and interest in areas which seemed beyond her years. She loved to help people, and spent a lot of time trying to work out ways in which she could end other people’s problems. Every time she saw a Big Issue seller she would want to buy one, or just give the seller some money. As her parents we tried to shelter her from things that we thought may upset her in the world; however Amelia was a very intelligent child and we soon realised the best thing to do was to help her understand, if we could, why these things happened. Little did we know that soon we would have to try and explain the biggest problem she would ever face.

Amelia was athletic and loved dancing, singing and acting; she attended drama school at the weekends and was an active member of her Brownie and Cub Scouts group. So when she came to us with pain in her legs we thought it was a combination of growing pains (which we thought she had been suffering from for years), and over-activity.

The pain didn’t go away however and after numerous tests, scans and consultations; Amelia was diagnosed with stage 4 Neuroblastoma – a very aggressive form of childhood cancer. She had a large tumour which stretched from her kidney to her lung; and had metastasised throughout her body and head.  On the scan, the only places that appeared to be clear of cancer were her feet and hands.

This was January 2009 and Amelia was seven years old. As you can imagine there was no way we were going to be able to protect her from the realities of what was to follow; so we decided to be open with her from the outset. After ten months of high dose chemotherapy, surgery, radiotherapy and a stem cell transplant she knew exactly what her blood counts should be; when she should have a transfusion, and what tablets to take when.

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Throughout these first months she went through some horrendous treatments, with pain and suffering which would often bring us to tears. However we knew it was her only hope of survival – she was literally fighting for her life. Amelia took it all in her stride of course, riding around the hospital on the drip stand or on her Heeleys, with all her chemo attached. The nurses would often look on in despair and fear as she zipped past them with no hair, no platelets and her cheeky smile!

After treatment Amelia appeared to make a remarkable recovery. The medical team were amazed that she had recovered so well with such an extensive disease. In September that year she was back at school with her friends, and went into remission. With all the treatment she had lost her hair, and although she looked just as beautiful without it, it was quite a daunting task deciding how she would tackle school without hair. She decided that she would wear her wig, as she was worried that she would upset some of the other children. This lasted all of two days – by the end of the first week she was swinging from the monkey bars upside down with no wig to be seen!

She went back to dancing and joined ‘Just 4 Dance‘; she started swimming again, and returned to Brownies as a Seconder. Christmas that year was very special as Father Christmas brought her a brand new bike and she was finally allowed to ride again.

Sadly, a month later we were back in hospital after the pains started again and an abnormal blood and urine result confirmed our worst fears – the disease had returned. This time we had some major choices to make. We knew that if the cancer came back there was no UK protocol for relapse, and the prognosis was terminal. Some people were being treated for relapse in the US; however the only feasible options for us at this time were here in the UK.

We decided to talk to Amelia about it; we were dreading the conversation as we knew how proud she was that she had beaten the disease. The options were that she had higher dose chemotherapy; or tablet chemotherapy at a lower dose; or no further treatment. None of these had anything other than a terminal prognosis; however there was a chance she could extend her time by having more treatment.

Amelia told us straight away that she did not want any higher dose chemo, and opted for the tablets. She was eight years-old and was having to make an unbelievably hard decision, but as her parents we felt it was not for us to prolong her suffering just because we didn’t want to lose her. Her consultant gave us a time frame of two to three months. Amelia started on Temazolamide a week later, and the race was on to fill the next weeks and months with fun, laughter, experiences and memories.

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With the help of some very special friends and family we set about the task of raising funds to go to EuroDisney and three weeks later the three of us were on the Eurostar going to see the delights of Mickey and the Princesses. We were overwhelmed by the support we received, even from complete strangers, and with everyone’s help we were able to experience a number of treats from Legoland to a shopping spree in London.

Amelia was a massive Harry Potter fan and she was so lucky to get the opportunity to visit Leavesden Studios where they were filming the last two films – we surprised her by saying we were just going to a Harry Potter exhibition! When we got there she realised where we were and as we were being shown around the top secret sets, in walked Daniel Radcliffe himself!! As you can imagine Amelia was absolutely amazed and this was probably for her the best day of her life. Daniel was lovely with her and by the end of the day they were running around the set like brother and sister.

In March Amelia was still well enough to have her first Holy Communion, celebrated with her family and school friends. She was also offered the opportunity to go to Lourdes with the HCPT, and although we were concerned she would not be well enough to make the week in France she was desperate to go. By this time it was April and we had already managed nearly four months; we knew that every day we were on borrowed time, but we put all our strength into getting her there and she managed the whole week without any problems whatsoever. She even decided that, having seen the other sick children, she was probably better suited to helping them than being helped herself!

After Lourdes we could see that she was deteriorating and her last big trip was to London Zoo at the end of May, she had been invited by Cancer Research UK for a Little Stars Bravery Award. Amelia had a fantastic day and met Kara Tointon who instantly fell in love with her. Kara kept in touch with Amelia, texting her and visiting her in Bournemouth the day before she died.

After London Amelia was very weak and tired. The cancer had spread further, and had moved into her brain, she required more morphine and slept a great deal. We knew that we didn’t have much longer, and had to start to think about the next few days and where we were going to be.

Living in Bournemouth Amelia had grown up near the beach, but you don’t always fully appreciate what you have on your doorstep. We decided that we would rent a flat on the seafront so Amelia could hear the sea in her sleep and be peaceful. Again some angels bestowed us with the most amazing beach house on the Sandbanks peninsular, where one whole wall of her bedroom was glass and looked out on the sea. Amelia passed away peacefully listening to the waves with her mummy and daddy on 24th June 2010.

Two weeks later 650 children and adults attended her ‘rainbow funeral’ and Amelia-Grace Rainbow was born to give other children the opportunity to experience some of the treats that Amelia had, and create memories for other families to cherish.