01 / 03 / 2001 - 11 / 09 / 2006
In December 2002, we discovered that our 21 month old daughter Abbie was suffering from a rare cancer called Adrenal Neuroblastoma. After having a tumour removed from her abdomen we were hopeful that Abbie would make a full recovery, however in July 2003 we were devastated to discover that she had relapsed with the cancer spreading to her bones and bone marrow and a secondary tumour developing in her abdomen. Abbie’s cancer was also MYCN amplified which means that she had the most aggressive type.
Abbie responded well to the heavyweight treatment that she underwent – intensive induction chemotherapy, high dose chemotherapy, stem cell transplant, radiotherapy and Retinoic acid and was declared free of disease in January 2004.
In March 2005 Abbie suddenly started limping and was eventually diagnosed with a stress fracture in her left ankle. Sadly it failed to heal and subsequent investigations in June 2005 showed a relapse in her bone marrow. After several more rounds of chemotherapy and MIBG treatment with stem cell rescue in January 2006 we were hopeful that Abbie would go into remission, however a scan in April 2006 showed the cancer was back. Abbie had a few months of relatively good health but by July 2006 her condition began to rapidly deteriorate and our beautiful daughter died at home on September 11th at 7.36am.
See Abbie's Story for Abbie’s complete story.
What is Neuroblastoma?
Neuroblastoma is, after domestic accident, the second biggest killer and the most frequent cancer in children under five years of age
Source: International Society of Paediatric Oncology European Neuroblastoma Research Network
Neuroblastoma is an extremely aggressive childhood cancer of specialised nerve cells, called neural crest cells. These cells are involved in the development of the nervous system and other tissues. Most children who get this cancer are younger than five years old. In the majority the disease has spread by the time of diagnosis and despite intensive treatment and achieving remission many children subsequently relapse and die. It is one of the most difficult childhood cancers to treat and further research is needed to beat this disease giving children in the future the chance of survival.
About Abbie's Fund
Make My Childhood Cancer Survivable
Abbie’s Fund was set up by local mothers after Abbie terminally relapsed in June 2005. To date Abbie’s Fund has raised over £650,000 to fund research into making Neuroblastoma survivable. Abbie’s Fund is a registered charity with the aim of making Neuroblastoma survivable and supporting those children already suffering from this horrendous childhood cancer.
Claire Attard, founder & trustee of Abbie's Fund said:
"We recently met with two of the world’s leading experts in this field at The Royal Marsden, who are still struggling to receive proper funding to carry on with further research. We felt privileged to sit in front of these guys who were so completely passionate, enthused and convinced about the research they have been carrying out and how positive they were going forward."
"With the results they have achieved from the tests they have carried out over this period, they hope to be able to start some new trials on children with Neuroblastoma in the early part of next year. It may well take a couple of years or so before they have more conclusive results, but they are really optimistic that at the end of it we may well be close to having a ‘simple blood test’ for Neuroblastoma, and also a much better understanding of how the different drugs used are affecting different types of tumours. It would be amazing if between us all we could achieve that!"
"We are looking to raise £30,000 per year to be able to fund this ongoing research, which I know will be a challenge but one which we hope to be able to meet."
ABBIE'S FUND – “Make my childhood cancer survivable”
One of Abbie’s Funds key objectives is to raise funds to support research into making Neuroblastoma survivable.
Whilst Neuroblastoma is a relatively rare childhood cancer it is also one of the most aggressive resulting in very poor long term survival. Neuroblastoma is hard to treat successfully for many reasons but three of the key factors are:-
* Detection - techniques are relatively primitive making the presence of the disease hard to detect especially at low, (but still lethal), levels.
* Minimal residual disease – the presence of just a few rogue cancer cells can be enough to ultimately cause a terminal relapse. The limited detection techniques make it impossible to determine whether small numbers of cancerous cells are still present post treatment. Drugs targeted at ‘mopping up’ residual disease themselves have unpleasant side effects and therefore can only be used for a limited period of time. There is currently no ‘daily pill to pop’ with minimal side effects that can deal with these rogue cells to make Neuroblastoma liveable with in the longer term.
* Multi-drug resistance – over time the cancer cells evolve into ones more resistant to the treatments and therefore the ability of chemotherapy and other drugs to eradicate these cells diminishes over time.
The combined effect of these three factors is that children often end up in ‘perceived remission’ but with a undetectable time-bomb of the most aggressive and drug-resistant cancer cells still present within their bodies. This leads to the sad but inevitable relapse and virtually guaranteed death.
Abbie’s Fund is therefore looking to fund projects specifically relating to these three key issues. We are realistic enough to recognise the enormity of the task ahead and therefore have set ‘survivability’ as our goal rather than ‘cure’.
Whilst Neuroblastoma is newly diagnosed in only 80 children a year in the UK, the aggressiveness of the disease and the difficulty to treat it successfully means that any research would also inevitably lead to a better understanding and ability to treat more common and less aggressive cancers. If we can conquer a hard cancer like Neuroblastoma then cures for many others should fall into place.
Abbie's Fund Trustees:
Claire Attard, Mike Shaw, Jenny Grzinic, James Grzinic, Nicola Fox, Richard Fish