Luna's Story


On Jan 22 2007 our beautiful little girl Luna came into this world. She was the most beautiful baby I had ever seen. And a perfect little sister to our son Aldo then two. For the next 18 months she made our world a better place with her feisty nature and amazing smile. Then on Aug 05 2008, five weeks after I gave birth to our second daughter Enza our entire world came crashing down. Luna had been unwell for three weeks and after going back and forwards to our GP and A and E department, we decided that something was actually very wrong and demanded to be admitted to our local hospital. Two days later after diagnosing her with everything from toncilitus to meningitis they decided she had TB and sent us in an ambulance to St Marys infectious diseases ward. Thirty minutes after arriving we had a CT scan which revealed a tumour in her brain called an Ependymoma . It was an aggressive and fast growing tumour. An hour later we arrive at Great Ormond Street to start our long and heartbreaking journey.

Over the next few days Luna deteriorated and we were told she needed emergency surgery or she would die. After 11 hours of surgery our beautiful little girl came back to us a very different little girl. Damage from the surgery meant her swallow was unsafe, she had lost the use of her left side and was unable to sit up unaided. We were told she'd probably never walk.

Luna had other ideas. I always knew she was a fighter but had no idea of the fight we had ahead. Luna faced a year of gruelling Chemo which made her so poorly she ended up in Paedriatic Intensive Care Unit. The treatment was killing her we thought, but it was all we had. Over time and Physio Luna regained some strength in her left side and began trying to crawl. Still unable to swallow Luna continued to be fed via a tube overnight, something we still do, through her trachestomy tube.

Six weeks of radio therapy followed and still we were told the tumour wasn't shrinking. Through all of this Luna never complained rarely cried and could always make us laugh and smile through the pain of seeing our little girl with tubes and wires coming out of her.

Then after a routine MRI scan in December suddenly our surgeon called to say the tumours had shrunk and he wanted 'a crack at getting them out' We were elated a complete surprise a chance for us all to have a future. A dream we had dared not to dream for two and a half years.

In all between January and March of this year Luna had three lots of brain surgery, lasting eight hours each. All with horrendous risks we were fully aware of but a risk we were willing to take as we had a chance to be disease free. Again she recovered amazingly and without any real further damage. All the operations were a success and we were elated. Our consultant was amazed.

Sadly our post op MRI scan some weeks ago showed a new tumour next to her brain stem and a film of disease over her scar tissue. There is no more treatment that can be done in the UK. We went home and cried for several days then we looked at Luna and thought hang on she's not crying we cannot give up she has fought so long and hard and not a day passes that through all of this she hasn't smiled. So we searched and searched asked questions and somehow found contact with another family who's daughter had exactly the same disease and discovered there was something out there.

A treatment call Antineoplaston therapy which has had amazing results in the US. We have to try this.

The cost to meet the Doctor for assessment is £20,000
If Luna is accepted the treatment then costs £50,000 a year.

We don't know how many years treatment Luna will need but this is classed as a childhood disease.

We need help in any way shape or form. Be it time ideas or money. Please help us to save our little girls life. She truly is the most amazing strong little girl who deserves a chance to grow up.


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