My family and I live in a small village called Blunsdon just on the outskirts of Swindon, Wiltshire. My son goes to the local pre school where the staff and parents are doing their upmost to raise money for a beautiful, courageous little girl called Avaya who is fighting Neuroblastoma (A very rare, but aggressive childhood cancer).
I have decided to run 4 miles, every 4 hours for 48 hours starting at midday on Friday 30th April to raise money for Avaya, and would really appreciate your help and support.
Please, if you live in the area and would like to join me on any of my runs, the company and support would mean the world to me and hopefully we can all pull together to raise as much money as possible.
My runs will start from Blunsdon pre school at the following times on the following dates:
Friday 30th April - 1200, 1600, 2000,
Saturday 1st May - 0000, 0400, 0800, 1200, 1600, 2000
Sunday 2nd May - 0000, 0400, 0800
Avaya is 5 years old and has always been an energetic, confident, fun little girl however in October 2019 she started feeling unwell with intermittent symptoms of aches and pains (mainly in her legs, stomach and back), loss of appetite, tired, pale and generally not herself. After countless trips to the doctors and a paediatric consultant, on the 20th January 2020 the family received the devastating news that the doctors suspected Avaya was battling Neuroblastoma, a very rare but aggressive childhood
cancer. After numerous tests, Avaya was officially diagnosed with stage 4, high risk Neuroblastoma. Her primary tumour is located in her abdomen but it has also spread elsewhere in her body, mainly her bones and bone marrow.
Avaya has eight rounds of intense frontline chemotherapy that initially reduced the main tumour by around 50%, however, as the mass was still wrapped around major blood vessels the consultants deemed it was still too dangerous to operate. Following 3 further rounds of a different combination of chemotherapy, her cancer was stable, but had still not shown any improvement.
As frontline treatment did not work as expected and hoped, it is now referred to as refractory Neuroblastoma (we like to call it stubborn!!).
Avaya was enrolled into a clinic trial treatment (Beacon trial) in August. She has finished this course of treatment and her disease has slightly improved and is deemed stable, but it’s still not enough for the primary tumour to be removed.
We are waiting on suggestions of next steps, from experts at a national Neuroblastoma panel to see what they can offer Avaya next, but we also need to look at alternative treatments both in the UK and abroad that aren’t covered by the NHS. Unfortunately, these come at a very high financial cost, far beyond the families means.
I have set up this page to raise funds that will open up these other possibilities for Avaya, as sadly the NHS only has so many options for her.
Thank you so much for all your support and hopefully together we can give Avaya a fighting chance.
Stay safe, love Rhae ❤️ X
- ILA CULTON
- David Foley
- Paul Scarlett
- Nikolas Daines
- Louise McKevitt
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