Please help Erin fight against DIPG

Our friends Chris & Nina Moran have had the heart-breaking news that their precious, beautiful daughter Erin has been diagnosed with an inoperable brain tumour. The brain tumour is called DIPG and is the most fatal of children’s brain cancers. DIPG tumours are high grade and grow quickly - which means that symptoms develop swiftly, over a short time-frame and can be disabling. The tumour attacks the brain stem affecting breathing, body temperature, heart rate, eye movements and swallowing. Erin started with a squint on 19th April this year, was seen at the opticians on 23rd April, leading to an urgent eye clinic appointment the next day. A CT scan was done at this point in Paediatrics where it was initially thought that they could rule out anything life-threatening. On 29th April Erin developed slurred speech and was taken by her parents to A&E where again she was discharged. On 3rd May Erin had weakness in her right arm and then 4th May her right leg weakened too. A further eye clinic appointment led to her being sent to Paediatrics again and on 5th May an MRI scan was finally done and Chris and Nina were told that they had found a lesion on the Pons – part of the brain stem. On Wednesday 6th May they were given the utterly devastating news that they were going to lose their little girl. The prognosis for Erin is very upsetting as the average life expectancy from diagnosis is less than one year. Only 10% live for at least two years and 2% survive for as long as five years even with treatment. Surgery is not possible in the UK for DIPG tumours because the tumour is in such a delicate and important area of the brain. The standard of care for DIPG at present is radiotherapy alongside chemotherapy, and researchers are still looking into how they can improve the diagnosis and treatment of children with DIPG. Erin started a 5 week course of radiotherapy & chemotherapy on 26th May to try and shrink the tumour in the hope that it will ease her symptoms. Scans are ongoing but initially the treatment makes the tumour and surrounding tissue swell so it is too early to tell how effective the treatment has been until the swelling has gone down. In a condition such as DIPG the outlook is one of sadness and despair, and understandably Chris and Nina are seeking opportunities for alternative treatments with specialists across the globe, to try and improve the outlook for their precious little girl. With these options Chris and Nina have to weigh up what they are willing to put Erin through and have to give consideration to expense, viability and availability of the treatments in the hope that there is something out there for Erin. Chris and Nina have extensively researched and would like to take Erin to the new DIPG Centre of Expertise in Zurich. The clinic, located within the Children’s Hospital of the University of Zurich offers clinical trial options as well as individualised treatment programmes focused on producing improved therapeutic results for children with DIPG to try and improve overall survival times. The clinic has access to a world class radiation oncology programme as well as specialist trained paediatric neurosurgeons, neuro-oncologists and neurologists. We would like to raise some funds to help support them through this awful time and to give them the chance to help Erin in any way they can. If you are able to contribute, then please do. The family have a lot to take in and deal with at the moment so please respect their wishes for privacy – we assure you that any donation will be gratefully received and all donations will add up together to provide the support that is needed. Any messages left on this page with donations will be appreciated too, but please don’t expect a response from the family at this time.

Donations

  • Michael Pugh 
    • £20 
    • 11 hrs
  • Keeley Cromwell 
    • £20 
    • 15 hrs
  • Adrian Bann 
    • £10 
    • 15 hrs
  • Adam Hill 
    • £10 
    • 19 hrs
  • mark stanley 
    • £30 
    • 1 d
See all

Organizer and beneficiary

Joe Tillotson 
Organizer
Conisbrough, Yorkshire and the Humber, United Kingdom
Nina Moran 
Beneficiary
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