As a part of CelebMix Cares we are celebrating Brain Tumor Awareness month this month. Today, we’re bringing the story of Eleanor Stollery.
At the beginning of 2015, Eleanor Stollery was diagnosed with a Hypothalamic Glioma, otherwise known as a brain tumour. Eleanor’s parents, Tim and Kelly, and now watching as their four-year-old daughter is undergoing a long journey of chemotherapy and other treatments. Eleanor’s type of tumour is inoperable and will never go away unless a cure is found. Unfortunately, only 2% of the cancer research funding in the UK is spent on brain tumours.
The biggest side-effect Eleanor has suffered is visual impairment. Eleanor is officially registered as “severely sight impaired (blind)”. She can’t really interpret colour and she can’t really follow objects. The messages from her right eye are worse than what gets through from her left eye. Sometimes she sees flashes of light in her right eye but it is not her eye, it is the damaged nerves playing havoc with her brain. Eleanor sees very little through her left eye, possibly only through a minuscule, blurred, colourless, extremely short sighted pinhole, but because of her age it is very difficult to explain what she does see. The Doctors only give Eleanor a 30% chance of any improvement but it may take years before it could become a reality.
On her website, her father Tim Stollery, who is also a cancer survivor, wrote a personal message about his daughter. He said that although his daughter is severely ill, she’s still the happy girl she used to be.
“For now and on the outside she remains a bright, happy and positive little girl who knows she’s a little poorly. Her eyesight has been suffering tremendously and she is now registered severely sight impaired (blind). Other than that you wouldn’t know anything is wrong, however, as the chemotherapy takes its toll over the coming weeks and months, this may well change.”
The Stollerys’ goal is to raise awareness about the early diagnosis of paediatric cancers, such as brain tumours in young children. Websites that are aimed to help parents with early diagnosis, like HeadSmart UK, do not list poor vision as being one of the possible signs/symptoms in the children under five years old. Eleanor’s parents think that 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.
Tim and Kelly have created a ‘fighting fund’ for their daughter. Her journey will be long and tough, both emotionally and financially, which is why all of the money donated will be put aside for Eleanor’s future. The money will be spent on helping Eleanor’s successful progress which includes hospital expenses, new learning tools for the severely visually impaired and put aside for future treatments, be it complimentary or medically required, that are not readily available in the UK.
We have spoken to her parents and asked about how their lives have changed after Eleanor was diagnosed with the brain tumour:
Q: What early symptoms did Eleanor have and when did you truly feel that something was off?
A: Eleanor had rapid onset of vision loss, we noticed this changing over only a couple of months. That was her only symptom
Q: How long did it take until she was properly diagnosed?
A: She was diagnosed within 2 weeks from our first visit to GP (local Doctor), then us pushing for immediate tests at a specialist NHS eye hospital (Moorfields) – because if we hadn’t of pushed she wouldn’t have been diagnosed for at least 3 months, this was the GP referral that would have taken the time.
Q: What options were you given at the time of her diagnosis?
A: The only option was chemotherapy, the tumour is inoperable and Eleanor is too young for Proton Beam Therapy.
Q: How has the tumor affected your lives?
A: Eleanor is now severely visually impaired, it has turned our lives upside down.
Q: Tell us what you’d like to say to anyone going through the same thing as your family.
A: It is important to remain as positive and hopeful as possible, our children have time on their side, for medical science to catch up. Keep on top of everything possible to do with your child and their subsequent treatment, as it will not be an easy ride. Unfortunately, hospitals are understaffed and overrun in the UK.
To learn more about Eleanor Stollery’s story and progress follow her family on social media:
Twitter
Facebook
Official website
Kelly’s blog
To create awareness about Eleanor Stollery use the hashtag #eleanorsvoice