49%
£149,430raised of £300,000 target by 5198 supporters

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

Location
Wirral, United Kingdom

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Please click here to sign the petition: https://petition.parliament.uk/petitions/200017

**Please scroll down to the bottom of the page for an update**

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!

NOVEMBER UPDATE:

As many of you will know, Lucy is now in Mexico receiving treatment for an inoperable and terminal DIPG brain tumour. We've been absolutely blown away with all the support we've received to get us on this treatment programme and again, we can't thank you enough.

Lucy caught a cold straight after her fourth procedure, so took a week or so to recover. As soon as she was feeling better, the family went to the local park and Lucy managed to hang from a bar for 10 seconds. Having struggled to use a knife and fork to feed herself when she left the UK for Mexico, this is a big improvement and she was really pleased with herself. Great to see her confidence and strength returning.

The last procedure went well and the doctors confirmed there was even further tumour reduction. Lucy is clearly responding to the treatment here and we're so thankful for the support of everyone who is helping to make this possible.

Lucy will be continuing with this treatment for as long as it helps her and so we need to do everything we can to keep her on the programme. So please keep sharing this Crowdfunding page - get on Twitter, LinkedIn, Instagram, email all your contacts, tell everyone you know about it. JustGiving has been our main source of fundraising, so it's really important to us to keep this active.

OCTOBER UPDATE:

The treatment in Mexico has been going well with Lucy in good spirits. This photo was taken of Lucy in a UK hospital about a week after diagnosis after her biopsy. Compared with a photo of Lucy taken in a Mexico hospital more recently, you can see she's in much better shape and a LOT happier.

There are no guarantees with the treatment Lucy is currently receiving in Mexico, as it's early days into their programme and ultimately DIPG has a zero percent survival rate, so we don't know if the long term prognosis will be any different for us. We'll only find out when we get there! We're obviously living in positivity and hope though.

What we can say is that the aggressive, multi-modal and fairly non-invasive treatment plan is the most hopeful DIPG treatment in the world and the children who are currently there with Lucy are being given the best chance, with side effects that are acceptable in the circumstances. The side-effects of the standard treatment prescribed in the rest of the world are completely unacceptable - DIPG kids suffer too much.

So as well as the crowdfunding, we asking for another huge favour, mainly from UK friends, but everyone can play their part. We need 100,000 signatures on a petition to the UK government to fund DIPG research to help find a cure, as there isn't one at the moment and the research funding is beyond a joke, so a cure isn't on the horizon and hasn't been for 60 years.

As well as this, we also need to urgently give the children who are diagnosed with this terminal disease access to multi-modal aggressive treatment plans similar to the treatment Lucy is receiving in Mexico. There's no reason why this can't be provided in the UK. Terminally ill kids shouldn't have to be uprooted from family, friends and the community in order to save or prolong their life. The UK should be leading the way rather than providing 'care' which hasn't changed the outlook for patients in 60 years or more and has an unacceptable quality of life. Let's start giving DIPG children and affected families some hope, better treatment, and get the UK leading the way on this!

We don't want to make memories in the short time the children are supposed to have left before they die, we want to keep them alive!

So please, please, please can everybody make sure they sign the petition, and share it with their friends? And if you could also actively try to encourage people to sign the petition until we've hit the 100,000 signatures, it would mean the world.

Thank you so much! And thanks again for all the support.

https://petition.parliament.uk/petitions/200017

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Updates

9

  • Paula Newman1 month ago
    Paula Newman

    Paula Newman

    1 month ago
    Update from the Page owner

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  • Paula Newman3 months ago
    Paula Newman

    Paula Newman

    3 months ago

    Thank you all for the kind donations and supportive messages. I have just updated this page with the information Joe sent over from Mexico this morning. Please, please keep sharing! xxx

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  • Paula Newman4 months ago
    Paula Newman

    Paula Newman

    4 months ago

    Just a quick update for you as I'm sure you're all wondering how Lucy is doing. Lucy had her first intra-arterial chemotherapy treatment on Thursday. Since then, she's been feeling a bit rotten. Sickness and severe headaches, although no fun for Lucy (or Joe) are all to be expected following treatment, however we're hoping to see some improvement over the next few days. I'll keep you posted, meanwhile, please keep sharing! Thank you all for the generous donations, it means everything xxx

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5 months ago

Paula Newman started crowdfunding

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Supporters

5198

  • marian horrocks

    marian horrocks

    Dec 12, 2017

    This year, I have shared your electronic Christmas card to my FB friends and donated the money I would have spent on cards and postage x

    £50.00

  • kath woolliscroft

    kath woolliscroft

    Dec 12, 2017

    I am happy to see there is more support, thank you so much xx

  • Anonymous

    Anonymous

    Dec 11, 2017

    Collected for you by Merseyside Rock Choir - thanks to the generous public and good luck Lucy!

    £720.41

  • lesley Trotter

    lesley Trotter

    Dec 11, 2017

    Thinking of you all this Christmas

    £30.00

  • Kane Horton

    Kane Horton

    Dec 9, 2017

    Well done for being so brave. You should be so proud of yourself

    £30.00

  • Pauline Jones

    Pauline Jones

    Dec 9, 2017

    Keep going Lucy 😉 x

    £20.00

  • Helen Davies

    Helen Davies

    Dec 8, 2017

    What an amazing little girl, all my best wishes to you and your family xx

    £10.00

About the fundraiser
Paula Newman

Paula Newman

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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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