The Isobel Kelley Fund

Raising funds for The Brain Tumour Charity in memory of Isobel

Isobel's Story

Isobel was a happy, apparently fit and healthy two year old. On 27th July 2003 she got out of bed in the morning and couldn't stand up.

On 29th July 2003, she was diagnosed with a brain tumour, an inoperable central nervous system primitive neuro ectodermal tumour (CNS PNET). These are rare and aggressive brain tumours. Patients with CNS PNET have a very poor prognosis and current treatments, including high dose chemotherapy and cranio-spinal radiotherapy, are relatively unsuccessful and have severe lifelong side-effects. This is particularly the case in very young children. Izzy had an operation to insert shunts to remove the pressure in her brain and this provided some relief to the symptoms she was suffering. Despite a very brave battle against this terrible disease she tragically died at home just three weeks after her first diagnosis.

"'We cannot judge a biography by its length, by the number of pages in it; we must judge by the richness of the contents...sometimes the 'unfinisheds' are among the most beautiful symphonies."

Victor Frankl

Fantastic support

Isobel's parents, Kate and Dave joined The Brain Tumour Charity setting up The Isobel Kelley Fund to help fund research into the causes, diagnosis and treatment of brain tumours.

Since being set up in October 2003 The Isobel Kelley Fund has received fantastic support, including being the Chief Constable's nominated charity for Surrey Police for two years. Numerous fundraising events have taken place in support of Isobel's Fund, some arranged by Isobel's family, but many by family, friends and colleagues. Events include a family fun day, a charity ball, world record attempts (superhuman efforts by Lee Chamberlain), a jailbreak organised by Guildford Pubwatch, a charity car wash at Godalming fire station, sponsored marathon runs and many, many more. Through this magnificent support over £100,000 has been raised in Isobel's memory.

Funding groundbreaking research

These funds are being directed towards research into the type of tumour that Isobel developed.

Despite the need for new and more effective treatments, little research had previously been done to examine the underlying causes of CNS PNET, partly due to their rarity. The Isobel Kelley Fund is supporting a study carried out at The University of Nottingham aimed to identify molecular markers as a first step to improving the treatments and therapies available to fight the cancer.

The study, published in the prestigious journal “Lancet Oncology", was led by Professor Richard Grundy at the University's Children's Brain Tumour Research Centre and Dr Suzanne Miller, a post doctoral research fellow in the Centre.

Ultimately, the research has identified the two genetic markers as a promising basis for more effective tools for diagnosing and predicting outcomes for young patients with these types of brain tumours.

Summary of the paper on The Lancet's website: Markers of Survival and Metastatic Potential in Childhood CNS Primitive Neuro-Ectodermal Brain Tumours: an Integrative Genomic Analysis

Our lay summary of this research

Excellent results

Isobel's parents Kate and Dave and her brothers Daniel, Lewis and Elliot are delighted that the funds raised have helped contribute to such excellent results.

Kate and Dave state:

“Our little Izzy was a happy, healthy, bright, fun–loving and mischievous little girl. If the research we are helping to fund means that families like us in the future do not have the agony of hearing 'there is no treatment available' in this era of such fantastic advances elsewhere in the medical and scientific world, then we will have achieved our aim. All those who have contributed to our fundraising in any way will have helped us to do so. For that we are, and always will be, sincerely grateful".