Lily-Mae

Lily-Mae was diagnosed with stage 4 high-risk neuroblastoma shortly after her fourth birthday back in 2012. Despite the intensive chemotherapy regimen given to newly diagnosed children with high-risk neuroblastoma, Lily-Mae’s treatment path would prove to be even more difficult. An inadequate response to the initial 80-days of chemotherapy meant further rounds of even more toxic chemotherapy were required before Lily-Mae could proceed to the next stage of treatment. 

During this difficult time, Lily-Mae captured the hearts of a nation when, inspired by family-friend, Stephen Macken, a chorus of singers and performers from across Ireland came together to record a version of the Elton John classic, ‘Tiny Dancer’. It became number one in Ireland, propelling Lily-Mae and her family into the spotlight.  

Money raised from the song was held in trust to support Lily-Mae, and Judith set about exploring pioneering treatments for her daughter. In addition to the tremendous care she received at Our Lady’s Children’s Hospital, Crumlin (where she had high-dose chemotherapy with stem cell rescue that finally cleared her remaining stubborn disease), Lily-Mae’s family were committed to doing everything they possibly could to try to prevent a recurrence of her neuroblastoma. 

Having already travelled to London to benefit from a specialised form of radiotherapy, in late 2013, the family flew to Grand Rapids, Michigan, USA to enrol Lily-Mae on a maintenance trial of a drug called DFMO, under the expert care of Dr Giselle Sholler, Head of the BeatCC research consortium. In the process, Lily-Mae became the first child from Europe to travel for such maintenance therapy.  

After two years of regular trips back and forth to see Dr Sholler, Lily-Mae finished the DFMO trial in November 2015. She has now been disease-free since October 2013 and whilst life has not always been plain sailing because of the effects of the gruelling treatments she endured, Lily-Mae is living a full and happy life doing what young people do. 

Supporting other children 

With Lily-Mae doing well, in 2022, the family decided the time was right to put the funds held for potential further treatment, to work in support of other children battling the disease. 

The family donated €100,000 from Lily-Mae’s fund, The Sunni Mae Trust, to Solving Kids’ Cancer UK to fund future initiatives to directly help children with neuroblastoma, including wider support in Ireland for families affected by this disease.  

Leona Knox, Solving Kids’ Cancer UK’s Head of Research, received the cheque from Paul Hayes, Lily-Mae’s uncle and founder of The Sunni Mae Trust. She said, “We want to thank Judith and Paul for placing their trust in Solving Kids’ Cancer UK. We never take these donations of children’s funds lightly or for granted, and our commitment is always that every penny will be spent wisely to maximise the benefit for children with neuroblastoma.”