Time is running out to save the life of brave little Lucy

Nine-year-old Lucy Moroney has been diagnosed with brain tumour just five years after death of mum and sister

Fundraising is in progress for nine-year-old Lucy Moroney from Heswall who has a brain tumour(Image: UGC TCH)

A family’s already broken hearts have been shattered into a million pieces by discovering their nine-year-old girl has an inoperable brain tumour.

Those close to Lucy Moroney have already experienced incredible loss after Lucy’s mother and baby sister tragically died in 2012.

They were left reeling in shock at the news last month that Lucy has a Diffuse Intrinsic Pontine Glioma (DIPG), a terminal, inoperable and so far untreatable malignant brain tumour.

Her aunt Paula Newman has launched an urgent £300,000 JustGiving crowdfunding appeal to help towards the costs of alternative treatment for the tumour.

Paula says on her page: “Five-and-a-half years ago on January 24, 2012, my sister Nicola (Lucy’s mum) tragically died from sudden cardiac arrest at the age of 33 due to undiagnosed dilated cardiomyopathy, a heart condition.

Nine-year-old Lucy Moroney from Heswall with her sister Amy(Image: UGC TCH)

“Lucy was only four-years-old at the time and her sister Amy was almost two. Nicola was also pregnant with their little sister Ruby who was born by c-section at 24 weeks gestation during Nicola’s attempted resuscitation.

“Ruby lived for 14 hours but died in her daddy’s arms on Tuesday January 25, 2012. Since the tragedy of losing Nicola and Ruby, Lucy and Amy have had their lives rebuilt around them by their loving dad, dedicated nannie (my mum) and the rest of the family.

“On Monday, July 17 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.”

She continued: “Currently treatment is limited to radiotherapy of which there are several delivery methods and chemotherapy on the NHS.

“There has been very little research into DIPG and therefore comparatively little is known about this type of cancer.

Nine-year-old Lucy Moroney from Heswall with her late mum Nicola in September 2011(Image: UGC TCH)

“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.”

The family is researching possibilities around the world in an attempt to help Lucy.

These include intra-arterial chemotherapy treatment under Dr Alberto Siller and Dr Alberto Garcia in Monterrey, Mexico and convection-enhanced delivery (CED) at The Harley Street Clinic in London or Dr Mark Souweidane at The Weill Cornell Brain and Spine Center in New York.

This treatment is said to be 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.

BET domain inhibitors are another a possible therapy in DIPG under Dr Rishi Lulla who will be pushing into clinic a recent science discovery by Prof Ali Shilatifard of the Northwestern University Feinberg School of Medicine in Chicago.

They are also looking at treatments in Australia and Spain.

Nine-year-old Lucy Moroney from Heswall with her sister Amy(Image: UGC TCH)

Paula continued: “We would also like to find a nutritionist for Lucy to advise on a suitable diet as 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.”

She pointed out, however: “The 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.

”If you can’t help by donating to Lucy’s Pineapple Fund - Lucy loves pineapples! - then any research you can do into these and potentially other alternative therapies would be fantastic.

“We are open to suggestions and advice from anyone who has dealt with DIPG, we don’t have time on our hands to become experts. I’m sure you’ll understand that we want to do absolutely everything we can for Lucy.

“With the tumour being grade 4, we don’t have time on our side so we need to raise as much as we can as quickly as we can. Any fundraising ideas you have, please let me know.”

At the time of writing almost £40,000 had been raised towards the £300,000 target by almost 1,400 supporters. “Thanks for all of your kindness. I don’t know what to say, you’re all amazing,” Paula says.

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