Written in 2013/14
Elin was born in Jersey and has a little sister called Nia and a golden retriever called Jess. Dad Martin would love to do a triathlon but in the real world is an English teacher... and mum Sian is taking time off teaching for Elin's treatment. The family all now live in Seaford, East Sussex, near the coastguard cottages you can see at the end of the film 'Atonement'.
Elin loves to walk Jessie on the farm-tracks nearby and ride her bike with her dad. Her favourite Saturday afternoons are spent playing with her friends, raiding the dressing up box and putting on shows in the living room. She likes to disappear with her sister down to the swing and summerhouse at the bottom of the garden (when the weather allows), and goes to the local school - which she loves. Gymnastics, ballet, swimming and skating are also favourites and Elin takes part when she can.
She adores Harry Potter and wants to be Hermione, and loves reading novels on her own (with a torch under the covers when she is supposed to be sleeping). Books and films are a real escape for Elin - give her a good story and she is lost in that world (and ill-timed parental prompts to eat/tidy/sleep are voices that get lost in the mix).
We try to go to Norfolk every Easter, where Elin has adopted a rescued shire horse called William. She looks forward to seeing William more than chocolate and draws endless pictures of him. Another important sidekick is her favourite teddy, Reddy. Reddy also features heavily in pictures and paintings, and lately seems to have taken on superhero status, cape and all. Superhero powers or Hermione's magic are well-needed just now.
Facing reality without a magic wand is the reason for this appeal.
The reason for this appeal is because all this growing up happened alongside the most devastating diagnosis and treatment. Years of chemotherapy, surgery, radiotherapy, sickness, repeated hair loss, periods of hospital isolation, exhausting travel, separation from family and friends, MRI, CT and bone scans...though many who met Elin struggled to comprehend all this as she seemed to take it all in her stride. However, positivity can only take you so far and the reality was devastating.
All the approved treatment protocols in the UK for Elin had been exhausted. Our appeal was to allow us to access further treatment that could help Elin, both in the UK and abroad.
Any money not used for this is for research into treatment for this rare and under-funded disease. This is through our affiliation with the Ewing's Sarcoma Research Trust, which was set up in 2011 to promote understanding, awareness and research into treatments for Ewing's Sarcoma. This work is desperately needed as there have been no real developments in this field for decades. Its rarity and low profile work against the children and teenagers trying to overcome it.
Please donate and share this if you can. There is a desperate need to increase funding, vital research and awareness.