The Spider-Ede Appeal

Spider-Ede: Edie May

Last month we had some devastating news. Our great niece had been diagnosed with an inoperable brain tumour. 24 hours later she had further MRI scans at Aldey Hey Children’s hospital in Liverpool and they concluded that there was a 95% chance that it was a Diffuse Intrinsic Pontine Glioma (DIPG), which are currently incurable in this country and therefore fatal. This news completely knocked us for six. Our own twins are just several months older, in fact they were born between the births of our great nieces, and are all just cousins living 5 minutes apart.

Out of emotion grew hope once we heard about a team of doctors in Mexico who have been using a method called intra-arterial chemotherapy and immunotheraphy to help treat children with DIPG (Making DIPG History). However this comes at a huge cost of £300,000 (estimated) for a year’s course of treatment, flights and accommodation in Mexico.

Any parent will tell you they would do absolutely anything to try and save their child’s life. I would exchange my own life for that of my own children, nieces or nephews in a heart beat. So our family and close friends have come together to help support this family and face the daunting task of raising this money whilst also spreading awareness of this awful and cruel disease. It is rare in that only about 25 children a year are diagnosed with it and you’re left thinking why? But that’s still 25 children too many plunging the parents into a world of unknown certainty and absolute devastation. More needs to be done to deal with this in our own country but for now we don’t have time for that as our niece needs treatment right away.

Yesterday the team at Instituto de Oncologia Intervencionista wrote to confirm that our niece had been accepted there for treatment and they are off for the start of January.

If you want to read more about their story then please visit the website at the Spider-Ede Appeal.

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