well where do I start….I get all my letters & booking forms done, I wait patiently on responses and then looked forward to the big day!
So this year we had the NI meet up in the Grove Activity Centre, Lisburn which was a great venue. We had the lovely Karen & Gary come all the way over from England with their son Gavin who were fabulous talking to people and Gavin had lots of fun with the kids especially Freya who kept him on his toes!!
We also had the fabulous Kim Hawksby who did a brilliant presentation about her life with Erb’s for us!
Kim’s Mum Julie and StepDad Paul also joined us and were a great help with greeting the families and dealing with a variety of questions!
I was then very pleased to be able to Introduce Dr Aidan Cosgrove who works at, Musgrave Park Hospital, Belfast and at Altnagelvin hospital, Derry and he is the Orthopaedic Paediatrician!
So with a year of me e mailing his PA and him, we got him to our meeting and he was quite comfortable with us and doing a talk for the families and we are now going to work together to try and have a clear pathway to care for families in NI for children with Erb’s Palsy!
We plan some further meetings with him in the future to hopefully form a strategy for the pathway.
I hope that all the families took something from the meeting
I know that I love my job as the NI rep and I am constantly learning and also experiencing my own journey with Freya but I hope that we can continue our meet ups in the future
and don’t forget myself, Karen or Kim are always here for you all to help in anyway we can