Thanks for taking the time to visit my JustGiving page. I am running the London Marathon in October to fundraise for The Great Ormond Street Hospital (GOSH) on behalf of Lily-May Betts. As many know, Lily is the granddaughter of Hayley Conroy, an EY colleague and friend of mine. Lily was diagnosed with a brain tumor (optic pathway glioma) and subsequent diencephalic syndrome and reduced vision in November 2017, when she was just 1 year old. GOSH has provided essential care and support to Lily and her family the last few years and I am raising funds to help give other seriously ill children the chance of a better future. 

More about Lily

Lily's tumor is very rare and she continues to be treated by Great Ormond Street Hospital (GOSH), reputedly the best children's hospital in the UK and internationally renowned, which gives some comfort that she is in good hands.

The treatment plan is chemotherapy and her family were initially told that she is likely to need chemo for 12-18 months. However, so far she's been on chemo for 4 years. She finished her last round of chemo earlier this year, although a large cyst has grown behind her eyes and needs monitoring along with the tumor. There is no "cure" for the tumor and it will be something she always has. It also comes with life-changing consequences, the extent to which are not fully known - at this time Lily has sight problems, is registered legally blind and needs hormone treatment. 

Lily is immensely brave, as are her mum and dad, who themselves were just 24 when she was diagnosed. Her mum has had to stop work to look after her.

The family are on a long journey and want to raise money for Great Ormond Street (GOSH) charity. The hospital, staff, and all the volunteers do such a good job to support the children that have to spend time there and they also do a lot of research, which is of course critical to be able to beat these terrible diseases. They have a "Team page" dedicated to Lily, which this page is linked to, and get to input on how the money raised is spent. The first £10,000 was put towards the new Sight and Sound building for the hospital that was opened in 2022. Lily often uses this centre for check-ups and tests that are critical to her treatment, given the location of her tumor. The state-of-the-art equipment in the centre will be incredibly useful to Lily and children like her. The next monies have been put towards brain tumor research undertaken by the charity. 

Please can we ask for your donations. All proceeds will go directly to the charity. No funds will go towards the marathon, travel, or anything else. Once you donate, they'll send your money directly to the charity. Additionally, your details are safe with JustGiving - they will never sell your data or send unwanted emails. So, it's the most efficient way to donate - saving time and cutting costs for the charity. 

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Side note: I want to share some more details on Lily's condition so that word is spread about this terrible disease and so that other babies may not take as long as she did to be diagnosed. 

Diencephalic syndrome is typically referred to as "failure to survive." Lily was a troubled baby from the start - the doctors said she was lactose intolerant (she is not). From around 8 months old, having been weaned onto solid foods, Lily slowly started eating less. She also stopped putting on weight and eventually started losing weight. Her mum took her to the doctors time and time again but they disregarded her concerns because she had no other symptoms and was "happy" and "energetic."

Eventually, when Lily was 1, she ended up in an emergency room at a local hospital because she became lethargic and was immediately given a feeding tube which she had for almost all of the last 4 years. From there, they did multiple tests and finally found the brain tumor. They then found out that two of the side effects are euphoria and hyper-activity (read happy and energetic). 

So, my message to everyone is please don't think that because a child is happy and active, they are not ill. Trust your instincts! And keep pushing doctors on the same.

More about GOSH

Every day, 619 children and young people from across the UK arrive at GOSH. Doctors and nurses battle the most complex illnesses, and the brightest minds come together to achieve pioneering medical breakthroughs. And every day is a chance for you to make a difference. This extraordinary hospital has always depended on charitable support and everyone taking part in Team GOSH taking on the iconic 2022 London Marathon will be helping to give seriously ill children the chance of a better future. For more information about the work GOSH does visit the website: https://www.gosh.org/what-we-do