This is Róisín. She is a bright talented young girl. She is 11 and the second oldest of 4 childern. She loves school, basketball and football.
It was summer of 2018 while she was playing with her local u12 team in football that we noticed that she start to fall back behind her peers. She gradually started to get very stiff. A trip to the doctors and it was put down as growing pains and physiotherapy was recommended. A course of this worked for a while and then she sized up even more. So much more than before than she couldn’t run or jump with both legs of the ground. We decided to get MRI done just to rule out anything else. It was still being thought that her ligaments and tendons were extremely tight and they would have to work on these.
MRI done and results in………. Tuesday before Christmas and we were planning Christmas like everyone else… A phone call came to inform us that she had a tumor inside her spine and an appointment was made for her to be in Dublin in the morning. We spend a few days in Dublin then. Myxopapillary ependymona is the type of tumor and she got more MRI done to make it wasn’t spreading around her spine or brain. Luckly it wasn’t.
She got the operation done on January the 8th. They were happy with the operation and Róisín was determine to get better as soon as possible and return to her friends in school. She was up walking in less than a week and returned to school part time in two weeks. Job done on the road to recovery………..
Last MRI done after the operation showed small pieces still there. Invisible to the nake eye but picked up by the MRI scan. Brain scan still clear and a lumbar puncture was recommended to see if fragments flowing around the fluid. There wasn’t thank God.
Proton radiotherapy in Essen Germany is recommended as the best course of action for her. Coming from a family of 6…2 adults and 4 kids…. We do as much as possible together. Yet here we are two of us here and 4 at home. Trying to keep life as normal as possible for the rest. We are after the first day of her assessment 17 April. Expected to start treatment on May the 6th.
With the help of the Gavin Glynn foundation this would have been a harder. One phone call to John and he put our minds at easy. He sorted out flights transfers and accommodation for us. He has check in on us a few time to make sure that everything is OK. We know he is at the end of the phone if needed. For this we will be forever grateful. Thank you so much for your help Gavin Glynn Foundation.