Our Ellie-Mae's Story

This is the story of our Ellie-Mae a beautiful, funny, sassy loving little girl with heart of gold and strength of a lion, I have had permission from her parents to start this go fund me for my little niece, Please read Ellie-Mae story below from her parents. And please share and donate where possible for Ellie-Mae and her family and the charities that have helped them through this all.

Ellie-Mae was a happy healthy normal baby girl, with a normal pregnancy and delivery. Ellie-Mae was hitting all her milestones. Until one day when she was 16/17 months old. Ellie-Mae started being sick & couldn’t keep anything down. We thought it was a sickness bug at first. After a few visits to the doctor over the space of 2 weeks and them saying it was a sickness bug, we took her to A&E where they said it was gastroenteritis.

We had an appointment 2 weeks later with paediatrician who did lots of checks on her and did some bloods which came back clear. He wanted to do an MRI scan in 1-2 weeks. However that same week she stopped eating and drinking, she was being sick every morning and started to be morning, afternoon & night and also started to lose her balance.

Kingsmill Hospital had her in for an MRI on Friday the 22nd November…. That was the day our lives changed. They told us she had a brain tumour & needed to go to Queens Medical Centre that night. We arrived at midnight. 26th November Ellie-Mae went down hill rapidly. She went for emergency surgery and had a EVD fitted to drain the fluid on her brain. She was scheduled to have surgery to remove the tumor on the 3rd Dec (1 week later) She went down for surgery at 8:30am and at 7pm that night we got a phone call from the neurosurgeon to say that they have removed all the tumour.

Friday 6th December we met with the neuro oncologist who told us Ellie-Mae’s tumour was grade 3 Ependymoma. A rare brain cancer, the type of tumour Ellie-Mae had is more likely to return with it being grade 3. We got discharged from hospital on 9th December after her surgery (her surgery was on the 3rd dec) Saturday 14th December she went down hill at home. She had emergency surgery to have another EVD fitted, she’s also had a shunt fitted into her brain which got done on Christmas Eve, we got home Christmas Day, which means in 4 weeks she will have had 5 surgeries (4 in her brain) She has also had to have a Hickman line fitted on the 12th December so she can be put to sleep everyday for 6 weeks for the radiotherapy without having to have a cannula. She also had lumbar puncture to make sure the ependymoma hasn’t spread to her spine. Which it hasn’t!!!

The doctors have said if the treatment does not work the first time, her chances of survival are slim. We are very hopeful that the treatment will work so she can be at home with her sisters Laila & Freya.

Any money raised will go to help with some bills and ensure that Ellie-Mae has an AMAZING summer after everything she’s dealt with over the last 4 months the rest of the money is going to help the wards at queens medical with Easter eggs & then also selection boxes at Christmas, as the support we received from the hospital and gifts from many charities helped us get through that difficult time so much. We even woke up to a sack Full of presents from the hospital Christmas Day morning. We will be forever thankful to queens medical centre ❤️ especially ward E40 Larsens pride was amazing through our time at the hospital. We got a great big jellycat for Ellie-Mae and she takes only everywhere including getting put to sleep everyday. We’ve also had help from young lives vs cancer, Passic, Jamie forever 12 & the James Anthony foundation! They have all been amazing with us!

We are currently in Manchester today we are on treatment 23 out of 33. That’s 33 nil by mouth days, 33 general anaesthetics and weekly bloods done. I want to share her journey to raise awareness in children’s brain tumours & childhood cancer and also the signs to look out for! Please share Ellie-Mae’s story and if it helps any parent or child Going through this, just know you are not alone ⭐️ ❤️