Today, thanks to our fab Team Lisa, we gathered at the Starting Nursery & School event.
It was lovely to see a new member joining our group. Thank you to Violina for coming with your family. It was very nice to hear about your son's amazing achievement. To let everyone know that Yoan started self-infusion at the age of 7 when he moved from port to veins, is a great example to the other boys!
As for the older members, we enjoyed each other's company and some exchange of the experience of our day to day stresses, sometimes in extreme situations in our kid's busy lives.
We spent some time talking about how the group is working at the moment and what sorts of events we would like to hold in the future. We also had a few ideas for other ways to get more people involved - especially the children.
Then Christina gave a very valuable lesson to all of us about how important our own wellbeing is if we want to properly look after our children. Thank you so much Christina for the good tips! Finding a window to look out to the sky for five minutes when you find yourself in an emotional or stressful situation with your children, can be a really helpful way of just removing yourself from the moment and reducing your stress.
The best of all I must admit, and I believe everyone will agree with me, was the first Press Conference" that Max, Ollie, Lenny and Yoan gave in front of the camera and all of the parents. They were interviewed and then took questions from the floor, all of which they handled expertly. The boys were all so natural and so open when talking about their life with Haemophilia. We heard from their perspective, what little impact haemophilia has on their lifestyle. It was very reassuring to hear it as parents.
Huge thank you to all of them, well done boys!!
Special thanks also to Luke for being our cameraman today so we could use his filming experience!