Lily-mai's Disney wish

£12,229 of £7,000 goal

Raised by 261 people in 41 months
Hiya, my name is Lily-mai, I am 3.5 years old and live with my mommy, big sister and big brother in Worcestershire. I see my daddy regularly. I haven't had an easy 3.5 years so far and every day is a challenge for me. You see, I'm very delayed but have no name for what's wrong with me, I can't walk or stand unaided, I can't crawl or bum shuffle and I can't talk words, I have my own language and certainly lets everyone know what i want, my mommy says im a very clever girl.
Our world dramitcally changed on the 15th july 2014, i was practicing cruising and i fell, banging my head, i went very sleepy and started to vomit, my mommy thought i may be concussed so called 111, who sent the ambulance team out. we were rushed to hospital and i was incubated so i could have a CT scan to rule out any bleeds on the brain...they found a brain tumour the size of a tangerine and hydrocephalus. I was rushed to BCH to have an emergency EVD put in to relieve the fluid and pressure on my brain. On the 18th july i had my 8 hour operation to remove the tumour, however, they couldnt remove it all as its attached to the brain cortex, a later MRI scan showed another piece also remains, that leaves about half left. On the 19th july, 9 hours after my op, my left lung collasped,oxygen levels went down to 19%, i could have died if the amazing staff hadnt of acted to quickly... i was incubated again, so that machines could breathe for me whilst i healed on PICU. i also lost the use of my right side, but with amazing physio team, mommy's and my hard work it came back. i also have a unsafe swallow, a silent aspirate, which means my body doesnt recognise food or liquids going down to my lungs, so im now fed through a NG tube...the angels are certainly looking out for me.
On the 25th july, my mommy had the devasting news that the tumour is malignant... a brain tumour called MEDULLOBLASTOMA. The best treatment for this is radiotherapy but as im already very far behind we are using a french baby protocol, an intensive course of chemotherapy over 72 weeks. We dont know my prognosis, its anywhere from 30% to 65% survival over 5 years. I have has a pernament shunt put in to help keep the fluid building up on my brain and a Hickman line put in for treatmen, I have regular MRI scans, lumbar punctures, weekly blood draws, blood and platelet transfusions, eyes, ear  and kidney are checked, lots of hospital stays.
I would love to be able to go on a special holiday to meet Minnie mouse and all the Princess's, to swim with the dolphins, i loved swimming and ive now had to give it up, i miss swimming so much so this would be very speacial to me. It would also mean i have something to look forward to once my treatment is over or tp give my mommy,sister, brother and daddy a happy to memory in case i gain my angel wings.
Please help my mommy make this dream come true as it would make me so happy... Just £1 would be so much help to make this happen, every princess deserves a happy ending. All your generosity is greatly appreciated, thank you everyone, lots of love Lily-Mai xx





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We have some amazing news .... Lily will be going to Disneyland Paris on the 12 September, all being well. Fingers crossed she doesn't get poorly before. Lily is recovering from major 10hr surgery to de bulk the 2 big tumours in her brain. She will commence radiotherapy 28th September, this will give us 6-12 months more with her :-). Thank you again to everyone for your amazing donations xx
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Hi everyone, a quick update for those that don't follow my Facebook page.
I'm currently in hospital, I was in Worcester royal for 6 days and I'm now in Birmingham children's. I keep having very high temperatures that have reached 40.5. I have had a uti and c-diff, so currently on 2 lots of iv antibiotics. Hope my temp goes down so I can go home xxx
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Thank you again to everyone for supporting lily, you are all amazing.
Lily is now terminal, her original chemotherapy hasn't worked, it has grown along with a new growth and its spread to her spine. Lily has 'months' to live. We have started a very low dose chemo to try and prolong her life. She has also had a peg to help with feeding. She is still a smiley little girl, America is out of question now, so we are doing Euro Disney and plenty of other trips for her such as peppa pig world, Blackpool illuminations ect xx
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Thank you to everyone who came to Lily's fundraiser today. You've all been amazing again and raised £1.051.14 well done everyone and a great big thank you xxxx
Neil having his hair shaved :-)
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£12,229 of £7,000 goal

Raised by 261 people in 41 months
Created November 8, 2014
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lisa sherwin
31 months ago

What a brave little princess, hope you have a wonderfull time xxx

Gillian Kennard
31 months ago

For your courage and smiles - that means all of you x

Kate Norris
31 months ago

Such a brave little girl.. Hope you have a lovely time in Disney land

Jon Hubbard
31 months ago

So glad you get to take Lilly to Disney x

Donna Hubbard
31 months ago

Have an amazing time at Disneyland Lily, you will feel right at home with the magic and princesses xxx

Oakland International
34 months ago

Best wishes! From all the team at Oakland International x

Trevor Evans
34 months ago

Proceeds from Hengrove Athletic football match, Played on Sat 9th May for Lily-Mai. Our thoughts are with all xxx

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