The family of a young girl from Heswall are capturing the hearts of the Wirral community as they campaign to raise money for potential treatment to fight a devastating illness.
Interview with Lucy's Aunty - Robert Prichard reports for Wirral Radio.
9-year-old Lucy Moroney was diagnosed with a terminal and inoperable brain tumour back in July.
Her Auntie, Paula Newman, is pioneering a campaign to raise £300,000 for treatment as an alternative to radiotherapy or chemotherapy.
Speaking to Wirral Radio, Paula says that the response from the people of the Wirral has been overwhelming and that it would mean everything to the family to reach their goal.
On Monday 17th July 2017, our already broken hearts were shattered into a million pieces when Lucy was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a terminal, inoperable and (so far) untreatable malignant brain tumour. We have since found out that the tumour is a Grade 4, meaning Lucy is expected to have only months to live.
Currently, treatment is limited to radiotherapy (of which there are several delivery methods) and chemotherapy on the NHS at Alder Hey and other hospitals in the UK. There has been very little research into DIPG and therefore, comparatively little is known about this type of cancer. We know it only affects children and the cruel nature and location of the tumour means that DIPG children gradually lose control of their bodily functions.
Our family is doing everything possible, amid the whirlwind of disbelief we find ourselves in, to find alternative therapies and options that may work either outside or alongside the NHS. It's our only hope of helping Lucy and if we have hope, we can keep going.
Below is a list of areas we are currently researching:
- Intra-arterial chemotherapy treatment under Dr. Alberto Siller and Dr. Alberto Garcia in Monterrey, Mexico
- Convection-Enhanced Delivery (CED) - a way to overcome the blood brain barrier by implanting four very fine tubes, or catheters, surgically into the tumour to deliver chemotherapy drugs directly at an effective concentration - under Dr. Zacharoulis at The Harley Street Clinic, London, or Dr. Mark Souweidane at The Weill Cornell Brain and Spine Center, New York
- BET domain inhibitors - a possible therapy in DIPG under Dr. Rishi Lulla whom will be pushing into clinic a recent science discovery by Professor Ali Shilatifard, Northwestern University Feinberg School of Medicine
- Clinical trials of the drug DFMO at Sydney Children’s Hospital, Randwick under Dr. David Ziegler - Children’s Cancer Institute, Australia
- Anti-tumoral effect mediated by non-psychotropic cannabinoid receptors and other cannabinoid receptors researched by Dr. Cristina Sánchez, PhD in Madrid, Spain
We would also like to find a nutritionist for Lucy to advise on a suitable diet - there is some research that diet-induced ketosis causes changes to brain homeostasis that have potential for the treatment of malignant gliomas. We have also read about a metabolic diet which may help.
In addition, we've been in contact with acupuncturist and author, Dan Keown, who has recommended treatment via the Du and Yang Qioa Mai channels.
The above treatments do come at a cost, for example, the treatment in Mexico is estimated to cost at least £300,000 and even initial consultations can cost hundreds of pounds, so we would like to try and raise some funds to help towards this.
Any excess funds raised will go towards research into DIPG.