In September, our UK families got together for their very first PBD family meet up, kindly organised and hosted by Michelle Thompson. Our families spent the day at Synergy at Calthorpe, a gym and spa space at Calthorpe Academy, which was kindly donated for free by its owner, Andy Holden.
Not only did families get the chance to connect, but we had speakers from around the UK. We were joined by Steve from the charity SENSE, which supports and serves individuals who are deafblind, and by Dr. Santra from Birmingham Children's Hospital. Ewald Hettema and his wife Alison, a husband and wife team studying peroxisome reproduction in Sheffield here in the UK, also participated in our meeting.
Thanks to a team of dedicated volunteers, each child had an assigned carer, and were able enjoy swimming, music therapy, a bouncy castle, outdoor activities and even had a go at making their own candyfloss with the candyfloss machine. This also gave parents the chance to take part in the talks as well as a grieving session, and even a Dads’ session.