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We are fundraising on behalf of my granddaughter (and Lisa’s great 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 at least 12-18 months. So far she's had six month's worth and it appears the tumour is now stable. But there is no quick cure and it may that it is simply ‘brought under control’ and 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, as are my son and daughter-in-law, incredible when you consider how young they are themselves at just 24. Lily has to have a feeding tube through her nose to her stomach as the tumour is stopping her from wanting to eat and my daughter-in-law has stopped work to look after her.
Lily 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 baby, starting to walk and talk just like any other. She particularly likes doing ‘selfies’ with me - photos and videos then watching them back.
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 we will be able to update you on that when we know more.
To raise money, we've registered for the Thames Walk, which is a 50 km walk along the Thames Path (from Putney to Runnymede for those of you that know London). We expect the walk to take us the whole day, starting early morning and finishing sometime in the evening and are now training hard (well, trying to!) for it.
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 confided in 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!
Please note that this fundraising is linked to an overall Team fundraising page dedicated to Lily-May.
In that page we have set milestones for funding specific expenditures for GOSH on behalf of Lily-May. The evolution of these drives the overall team target:
— Target 1, £10,000, Q3 2018 —
My son and I have spoken to a fundraising manager at GOSH and want to raise £10,000 towards the new Sight & Sound building for the hospital. Lily-May often uses the current Sight & Sound department for tests and check-ups. Given the location of her tumour this testing is absolutely critical to her treatment and so the new dedicated Sight & Sound building which will be setup with state-of-the-art equipment will be incredibly useful for her and other children with audio/visual issues.