Story
When I was pregnant with Ada, I joined a group with lots of other expectant parents. One of those parents was a wonderful and very talented lady called Cassia. Cass' youngest son has recently been diagnosed with High Risk Neuroblastoma, a particularly nasty type of cancer affecting children mostly under the age of 5. It is a crap situation, made even crapper by the news that a very useful drug is no longer going to be available on the NHS.
We can't be much practical use, but we would like to use our able bodies to raise money for the fund to pay for the treatment privately, should it be necessary. So, Ada and I have entered events at the New Forest Marathon on 9th September. I say 'at', because (full disclosure) she'll be running the junior event and I'll be doing the half marathon. Easing ourselves in, shall we say!
We are grateful for any pennies you can spare; the money will go to a bigger treatment fund, or, in the case of it being covered by the NHS in the end, for whatever else the family need in this unimaginably difficult period.
A bit more from Cass here, along with a link to a petition about the drug in question:
Neuroblastoma is an aggressive cancer which affects about 100 new children a year, in the UK; most aged 5 or under.
NICE have ruled to deny these young children the right to the life-saving drug, Anti GD2. A drug which is part of standard protocol in US and Europe. They reject it purely on a cost basis. Though so few children need Anti-GD2, it would cost the NHS very little.
It would cost very little, but would give hope to those of us going through the hardest time imaginable.
Surely, we in The UK, cannot be happy to live in a country which denies children life-saving drugs?! Please, Lovelies. Join our fight, by signing and sharing the petition below, and please feel free to contact MP's etc. also. ❤️
https://petition.parliament.uk/petitions/215415
Thanks guys! Training has begun in earnest.