We’ve talked about doing some charity work this year as a club and later in the year we will do stuff for big charities including one of the big cancer charities (requested by a few of you) but I’d like to ask a personal favour and ask all of my Redditch students to get involved in doing something to help send a very poorly little girl to Disney land for her final holiday. Lily’s dad is a personal friend and I have followed this heart wrenching story first hand as its unfolded. The text and images below are from the go fund me page set up to pay for taking Lily to Disney. The funding is pretty much in place now for the trip itself but insurance is proving expensive so I think it would be brilliant if we could help.We can decide what to do to raise funds during the next class.
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 let everyone know what I want, my mommy says I’m a very clever girl.
Our world dramatically 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 permanent shunt put in to help keep the fluid building up on my brain and a Hickman line put in for treatment, 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 special 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