Thanks for taking the time to visit our JustGiving page.
We are fundraising on behalf of my granddaughter and Willow's step-niece, Lily-May Betts, who was diagnosed with an optic pathway glioma (brain tumour) and subsequent diencephalic syndrome and reduced vision in November 2017.

This is a very rare condition and she is being treated by Great Ormond Street Hospital (GOSH), reputedly the best children’s hospital in the UK and internationally renowned, which gives us some comfort that she is in good hands.

The treatment plan is chemotherapy and we’ve been told that she is likely to need chemo for about 18 months. So far she's had nearly a year's worth and it appears the tumour is now stable.  But there is no quick cure and it is likely that it will be something she always has. It may also have potentially life-changing consequences, the extent to which we just don’t know.

Lily is being immensely brave through her treatments and she has to have a feeding tube through her nose to her stomach as the tumour is stopping her from wanting to eat.  She is experiencing all the standard chemo side effects, of sickness, hair loss and low blood count, resulting in danger of infection, but in between the sickness, she is a happy, smiling toddler, just like any other.

We have a long journey ahead and  we want to raise money for Great Ormond Street Hospital (GOSH) charity. The hospital, the 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.  

Because we have a page dedicated to Lily which this page is linked to, we get to input on how the money raised is spent.  So far we've contributed £10,000 to the new sight and sound centre at GOSH which Lily will use often given the location of her tumour and the impact on her eyes and a further £10,000 to research into diagnosis of brain tumours in children, in the hope that this will help speed up diagnosis for children with severe brain diseases.  GOSH is an amazing hospital and the charity does wonderful things to improve the treatment and lives of the children being treated so we are keen to raise more money and get to that next tranche.

To help towards this, Willow and I have registered for the 5k Santa Dash run that GOSH are organising on 9 December.   For me this is as much as the challenge as the 50k walk I did back in September - because I simply can't run.  But with Willow to support and encourage, I'm confident we will do it, and in our Santa suits!

Please can we ask for your donations.  Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.

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

Diencephalic syndrome is typically referred to as ‘failure to thrive’. 

From last summer, having been weaned onto solid foods, Lily slowly started eating less and less. She also stopped putting on weight and eventually started losing weight. My daughter-in-law 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.

Those that I spoke to about this will know I was seriously worried about her from September.  Eventually, at the start of November, she ended up in A&E at a local hospital because she became lethargic and was immediately given the feeding tube, which she has had ever since, although she is still very underweight. From there, they did multiple tests and finally found the brain tumour. We then found out that the two side effects of the syndrome 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!