Lily-Mae from Galway, Ireland will be celebrating her 12th birthday this April, but for her parents Judith and Leighton every day is a blessing.

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’, taking it to number one in Ireland and 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 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 children do.

“She loves singing and dancing, and playing with her brother Evan”, says Judith, “She’s just a normal child really, not at all defined by everything she went through with neuroblastoma. I couldn’t be more proud of her, she’s my world.”

Supporting other children

With Lily-Mae doing well, the family have decided the time is right to put the funds held in case she needed further treatment, to work in support of other children battling the disease.

“We always said we’d wait until five years post-treatment”, says Judith. “Now feels like the right time. The work that Solving Kids’ Cancer is doing is so important. They are leading the way on research, not only in the UK itself but also in terms of making collaboration happen between experts across Europe and America. All of which will ultimately help children here in Ireland, as well as elsewhere. Neuroblastoma is a terrible disease and it’s so challenging to treat successfully, and even then the side-effects from the treatment can be so severe. Solving Kids’ Cancer is bringing more hope to more families and making a real difference to the lives of children afflicted by neuroblastoma.”

A donation of €100,000 from Lily-Mae’s fund, The Sunni Mae Trust, will be used by Solving Kids’ Cancer to fund initiatives to directly help children with neuroblastoma, including in Ireland. 

“We are so grateful to Lily-Mae’s family for Solving Kids' Cancer and its work with funds raised for their precious girl”, said Nick Bird, Chair of Trustees, Solving Kids’ Cancer. “However hard we work ourselves it is only through the generous support of others that we are able to make the greatest possible impact and to ultimately help save the lives of more children like Lily-Mae. Everything we do is about putting children and their families first, something of which we are both extremely clear, and, extremely proud. As a parent-led charity, parents helping other parents is a part of our DNA.”

Leona Knox, Solving Kids’ Cancer’s Head of Research received a 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. 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.”

Leona receiving cheque from Paul Hayes