Eleanor’s website is constantly growing -like her- so try to come back regularly to see what’s new and how she is getting on! You can also follow Eleanor’s progress and help us raise awareness on the following social media profiles:
To bring you entirely up to date on where Eleanor is medically, please click here.
To learn about Eleanor’s blossoming acting career, you can click here.
This website has many embedded pages with a great deal of information that has been built up over the course of Eleanor’s journey. If you have the time you can drill down for much more in depth information under the various headings, especially in the Medical and Media sections.
Eleanor has an inoperable brain tumour (it cannot ever completely be removed), which has caused her to become severely visually impaired. She is almost constantly on one treatment or another which can come with horrible side effects, and has regular hospital visits and tests to contend with. We do not want to let this define her and she carries on with life as normally as is feasibly possible.
We do however want to raise more awareness around these conditions because early diagnosis is key to other children having more of a positive outcome -if diagnosed- from their inevitable treatments. Amongst many websites, one of them that comes close to helping parents with early diagnosis is: HeadSmart UK – www.headsmart.org.uk
The trouble is they do not list poor vision as being one of the possible signs/symptoms in the under 5’s, so some more work is needed in this area to change things for the better and raise awareness for parents, opticians, doctors & other professionals dealing with young children.
Addendum – after almost 2 years of campaigning and with your combined strength (our social media following), Headsmart UK finally buckled and changed their symptom guide to include ‘suspected’ vision loss in the under 5 age category & vision loss in the 5-11 age category. It is still not as easy to find as we’d like it to be (not apparent on the front of their website, but shows on the distributed symptom card – perhaps this is to appease us), so we will keep campaigning and trying to raise awareness – ourselves!!
If the chemotherapy and other treatments work well for Eleanor we are hoping she comes out of this with nothing more than being severely sight impaired (blind), because that is what this nasty tumour has done to her. Above all, we wouldn’t want anyone else to have to wait around to get the right help.
Medical science being what it is, Eleanor might even get some of her eye sight back one day! We’ll be keeping everything crossed for that day!
Looking forward to hearing from you all very soon!
Love, Tim, Kelly & Eleanor x