Robyn Genavieve Higgins 19.03.02 – 29.09.13

Brave Robyn Higgins passed away on 29th September 2013 after battling neuroblastoma from the age of seven. Robyn was a beautiful girl who inspired thousands of people with her gorgeous smile and cheeky sense of humour. Robyn adored make-up and shopping and when she wasn’t doing this she loved nothing more than to play with the family dogs, Molly and Logan. Her unstinting courage in the face of this aggressive cancer was second to none and her strong character and determination will never be forgotten by those who knew and loved her.

Her mother Lisa says: “Robyn was a truly beautiful girl both inside and out. She had a particularly naughty sense of humour which always made us laugh.  She will be forever in our hearts.”

We would like to extend our gratitude to The Neuroblastoma Childhood Cancer Alliance for the on-going support over the last 4 years and would appreciate anyone who does not want to donate or give flowers on the day to donate to Robyn’s Just Giving page.”

Discussions will be held as to what her parents, Lisa and Greg, would like to do with the funds when the time is right.

A celebration of Robyn's life entitled “A Remembering Robyn Mass” will take place on Thursday 10th October 2013 at 3.00pm at Our Lady Queen of Heaven, Frimley.

Everyone is welcome. The family ask that everyone who attends wear a splash of purple, Robyn’s favourite colour.

This page has been set up by the Neuroblastoma Children’s Cancer Alliance UK (NCCA), the charity that helped Robyn’s family fundraise for treatment.

Please help us to create a lasting legacy of hope in Robyn’s memory.

Your donations will be used to help babies and children with neuroblastoma receive treatment. If they are unable to join a UK trial, we’re able to fundraise for a child’s much needed treatment abroad. With your help, we can fund children’s treatment costs, support families and pay for research into the disease.

We would love to help you if you would like to organise a fundraising event or activity in Robyn’s memory—please contact us on 020 7284 0800 or email us at info@ncca-uk.org  . You can also contact us through our website: www.ncca-uk.org

What is neuroblastoma?

Neuroblastoma is an extremely aggressive childhood cancer - it is the most common cancer diagnosed in children under 5 years old. Tragically, in most cases it is only diagnosed once it has already progressed to a late ‘high risk’ stage. As many children are unable to take part in UK trials, their only option is to access potentially life-saving treatment abroad. Even when children are tested clear of neuroblastoma, 4 out of 5 children will relapse. Survival rates for relapsed neuroblastoma are appallingly low and there is no real option here in the UK to deal with relapse. As it is a rare condition within the context of all cancers, the NHS is very restricted in the assistance they can offer to further treatment options.

In May 2009 when she was just seven years old, Robyn Higgins was diagnosed with stage four neuroblastoma. The cancer had grown from her pelvis and spread to her bone marrow. Robyn immediately began treatment at the Royal Marsden Hospital, Surrey, where she received nine doses of chemotherapy followed by a surgery to remove the primary tumour. 

Since then, brave Robyn has endured 9 rounds of chemotherapy, a very painful stem cell harvest, 9 hours of surgery to remove the very large primary tumour from her pelvis – which left her unable to walk for 7 months – high dose chemotherapy to eradicate her bone marrow, followed by a stem cell transplant and then 15 rounds of radiotherapy. The next, and what should have been the final stage of Robyn's journey, brought the Higgins family to Philadelphia in America. Thanks to a successful fundraising drive, Robyn was able to receive immunotherapy and a drug called Accutane at the Children’s Hospital of Philadelphia. The aim of the therapy was to rid her little body of any the stray lurking cancer cells that cause such massive rates of relapse in Neuroblastoma.

 However, just a year after completing the gruelling treatment, routine scans showed that Robyn had relapsed. Fortunately, Robyn responded really well to three cycles of ‘salvage chemotherapy’ but in the UK, there are no relapse studies or treatment protocols for relapsed neuroblastoma. In Philadelphia and in other hospitals in North America, there are relapsed neuroblastoma treatment protocols offered for Robyn and children like her. Without these options – the outcome for Robyn is unthinkable.

 Robyn’s mum and dad do not have insurance for health care in America so Robyn's treatment comes at a great cost. Robyn’s mum Lisa said “please, please help us give our delightful, playful, brave, gorgeous, cheeky girl a future by donating in any way you can to Robyn's appeal. Any donation, however large or small, makes a real difference for Robyn. I cannot stress this strongly enough – you really would be helping to save a child’s life.”