Ray is dad to Syngapian Miles, diagnosed at age 9. Ray, wife Charlotte, and two sons live in the UK.
In November 2021, inspired by other fundraising events, 9 year old Theo decided it was his turn to help his big brother. Miles, aged 12 was diagnosed with SYNGAP1 in 2018, and as a family we have been very open and excited by the recent genetic trials taking place that could very much change the future of many children and adults with SYNGAP1 and their families.
Theo has always been in tune with his brother. Like many other Syngap siblings, he has learned to adapt and be patient, and has an old and thoughtful head on his young shoulders. He set up a JustGiving page, setting himself the task of 60 minutes of solid dice stacking with 4 dice--an idea he got from his USA YouTube heroes. He planned to tally and time the stacks, hoping to achieve 350 in the time frame allotted. He managed 378 stacks within the hour and emerged with a sore hand but a delighted smile!
Theo has now raised GBP £1844 ($2100) for SRF and is already thinking about his next challenge. He hopes to inspire further Syngap siblings and/or fundraisers.
Theo said, “I set myself this challenge because my big brother Miles has SYNGAP1, and I would do anything to help him. My brother deserves to get all the support he needs”.
To read more (including a sore hand photo) or to donate, please visit Theo’s JustGiving page.
Ed. note: From Wikipedia: Dice stacking is a performance art in which the performer scoops dice off a flat surface with a cup and then sets the cup down while moving it in a pattern that stacks the dice into a vertical column via centripetal force and inertia. Take a look here!