My Name is Aoife Connor & I am Ellie’s mums first cousin. We are all from Donegal and Ellie was born on my birthday hence the namesake.
As a lot of our family and friends know shortly after our Ellie Aoife turned One we received the devastating news that Ellie had a tumour on her spinal cord. The tumour was pressing on Ellie’s nerves effecting the lower half of her body, in turn leaving her in extreme pain. Every time Ellie attempted to stand or walk she would cry uncontrollably from this discomfort. Eventually Ellie stopped any attempts of getting up on her legs to walk or stand. Aisling, Ellie’s Mum, had attended the GP & Letterkenny University Hospital on numerous occasions looking for the cause of this decline in Ellie’s developmental milestones.
After many weeks of trying to figure out what was causing Ellie’s pain. On 8th of January 2014, Ellie & Aisling were taken by ambulance from Letterkenny University Hospital to Sligo General for an MRI, once the MRI was completed Ellie was rushed directly to Temple Street Children’s hospital. Upon arrival they received the news that Ellie had an Intramedullary, T8-T12 spinal pilocytic astrocytoma tumour. Emergency surgery was required as soon as possible.
Surgery was scheduled for the following morning, after a long and painful wait, Aisling was informed that the surgeon was only able to remove 60% of the tumour in order to avoid any nerve damage. Unfortunately after some tests they were informed that the tumour on Ellie’s spine was very aggressive and it would more than likely grow back extremely quickly.
Ellie had her second surgery in March 2014, again the surgeon tried to remove as much of the tumour as he could without damaging any nerves. BUT AGAIN the devastating news continued that the tumour was growing back aggressively and that a third surgery would be essential. A treatment plan was put in place and her third surgery was scheduled for October 2014.
During Ellie’s third surgery the surgeon discovered that the tumour had grown so aggressively that it was now intertwined around her spinal nerves. Due to the aggressive nature of this tumour the surgeon made the particularly difficult decision, to remove as much of the tumour as possible, this also meant cutting though Ellie’s nerves. By cutting the nerves Ellie lost most of the feeling as well as the power in both her legs. This news was completely heart breaking and the thought that Ellie was never going to be able to stand on her own two legs again and do the things that other kids can do devastated our whole family.
After Ellie’s third surgery, on Christmas week 2014 and at only just over 2 years old her Chemotherapy journey started. Every two weeks for the next 18 months Ellie & Aisling made the long journey from Donegal to Dublin. They spent many nights in hospitals both here in Donegal and Dublin, including Birthdays and Christmases. Thankfully after this long bumpy road of Chemo it was confirmed by MRI on 28th August 2017 that Ellie was finally tumour free.
Ellie is a creative, funny, independent , and thoughtful little girl. She is a character and has never let her wheelchair define her. She loves to have fun and now wishes she could walk with her little sister. She is an amazing girl and anyone who meets her instantly loves her and her infectious laugh and her ability to tell hilarious stories.
At present Ellie is confined to her wheelchair. Daily life is not straight forward for Ellie and she requires support with tasks most people might not even give a thought to, but she never complains.
After extensive research we have found an intensive therapy program in the NAPA Centre in L.A. The Physiotherapists in the NAPA Centre have confirmed that Ellie is an ideal candidate for their Intensive Therapy Program. The intensive program consists of 2 hours per day of Neurosuit and 1 hour of DMI and PT for 3 weeks.
Ellie is now 9 years old and has met every fight face on. She is determined now more than ever that she wants to walk and this intensive therapy would give Ellie the best chance for her dream to come true.
Ellie has been accepted into the Intensive Therapy Program in October 2022.
WE NEED YOUR HELP. We are looking to raise money to send Ellie to LA for this intensive therapy to give Ellie the best chance to live the life she deserves and be as independent as possible. The funding would be for the intensive therapy which she will receive everyday for 3 weeks. They money will also help get Ellie any additional equipment required to help her progress. We would really appreciate as much help as possible as we cannot do this alone. We are asking friends and family to please share our story with as many people as possible and to donate anything they can that will help give Ellie this amazing chance. An account will be opened for Ellie where all the funds will be transferred, these funds will be accessed by Aisling only.
Thank you so much. We really appreciate all your help.