32%
£97,284raised of £300,000 target by 3729 supporters

Weʼre raising £300,000 to help towards costs of alternative DIPG treatments for Lucy

Location
Wirral, United Kingdom
Time left
98 days to go

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Story

This is Lucy.

Lucy is my nine year-old niece and the daughter of my sister, Nicola.

Five-and-a-half years ago, on 24th January 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).

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 25th January 2012.

Nicola and Lucy in September 2011

Since the tragedy of losing Nic 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.

Lucy and Amy

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.

Releasing balloons for Mummy's birthday

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.

If you would like to contact Lucy's Pineapple Fund, please use: lucyspineapplefund@gmail.com.

Please note, although my three children and Lucy and Amy are aware that Lucy's poorly, I know kids are known to be quite open/vocal. So if you know us, we'd like to ask for your discretion and care when it comes to talking to your children. For them, we are trying to focus on giving them as much of a happy summer holiday as we can.

THANK YOU.

Lucy was very pleased to see her sister, Amy, when she came to visit!

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Updates

5

  • Paula Newman

    Paula Newman

    11 days ago

    Paula Newman

    I have just sat and sobbed my way through all your lovely messages. I read ever single one and I simply cannot get over your kindness. Thank you from the bottom of my heart xxx

    Share this update to help us raise more

  • Paula Newman

    Paula Newman

    13 days ago

    Paula Newman

    Thank you from the bottom of my heart for all of the donations and support. I can't believe the generosity of friends and strangers alike. Brilliant, amazing stuff x

    Share this update to help us raise more

  • Paula Newman

    Paula Newman

    14 days ago

    Paula Newman

    I'm receiving lots of emails offering support and I just wanted to say thank you and that I'll get through them as soon as I can. #HelpLucy

    Share this update to help us raise more

22 days ago

Paula Newman started crowdfunding

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Supporters

3729

  • Ruth Jarman

    Ruth Jarman

    Aug 18, 2017

    My friend told me about Lucys story & after reading it Im hoping and praying you get Lucy to mexico I cant begin to imagine what Lucy & all the family are going through love & best wishes 💔 Ruth xxx

    £20.00

  • L Shaw

    L Shaw

    Aug 18, 2017

    Dear Paula, Stan and CaroleThinking of you all and hope Lucy gets her treatment abroad. If I can help in any other way please let me know. X

    £100.00

  • Lisa Kyffin

    Lisa Kyffin

    Aug 17, 2017

    Best of luck in reaching your target. My thoughts and prayers are with you and your family xxx

  • Jay Durham

    Jay Durham

    Aug 17, 2017

    Keep up the good work. All the best Lucy xxx

    £30.00

  • Susan Pemberton

    Susan Pemberton

    Aug 17, 2017

    So sorry to hear what Lucy is going through, wishing you all the very best of luck with your research and Lucy's treatment. Xxx

    £20.00

  • KATIE WARDMAN

    KATIE WARDMAN

    Aug 17, 2017

    Wishing you all the luck for Lucy and your family xx

    £20.00

  • Victoria Hanlon

    Victoria Hanlon

    Aug 17, 2017

    Every little helps xx

Paula Newman

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About the fundraiser
Paula Newman

Paula Newman

Wirral, United Kingdom

My name is Paula and I'm Lucy's 'Auntie P'! Our family is from the Wirral, which is where Lucy and her family live. If you'd like to contact me personally, you can use this email address: gwennyferret@gmail.com

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