Sophie and Alan Kennett have thought of an ingenious way to raise regular funds to support their son Roman and their chosen charities. They have set up a weekly Bonus Ball to play amongst friends and family. The big bonus for the participants is that the odds of winning are much more favourable than any lottery tickets or scratch cards. Plus every penny donated to the Myotubular Trust pays for new research to find a cure for Myotubular and Centronuclear Myopathy, which is the condition that affects Roman. The family also supports other worthwhile charities too that are close to their hearts – Hope House, Little Rascals Foundation and Breathe On.
Sophie explains how Roman’s Lottery Bonus Ball works:
‘This has been a really popular way to raise regular funds amongst our close friends and family. Each week, all our friends and family are invited to pay £2 per number between 1 and 59 from Roman’s Lottery Bonus Ball – so instead of doing this through the ‘National Lottery’, they simply choose a number from me.
I simply write it as my status on Facebook every week on a Sunday, and my friends and family pick the number(s) they want, giving me cash or paying by ‘PayPal’. I keep in touch with everyone and advertise with them which numbers are left to buy on my FB posts every week, but some people pick the same ones every week too! So if all the numbers are sold (which they usually are) that generates £118 cash in total per week! The bonus ball winning number is then selected from the ‘National Lottery’ bonus ball winning numbers which are drawn every Saturday! That means our lucky winner gets £70 out of the funds we have collected. Our chosen charity received £48 per week (or the remainder of the funds).
The good news is that it’s WIN:WIN – not only does one of our friends and family receive a nice amount of cash, but also ours and Roman’s chosen charities benefit too.”
Roman has been diagnosed with x-linked myotubular myopathy. He is now 7 months old and has a tracheostomy (a small incision into the windpipe to help him breathe) and is mechanically ventilated overnight.
Since Roman was born, he has only ever been home for 2 days. He spent 6 weeks following his birth in an ICU and Neonatal Unit because he was born floppy. At birth, he took one breath and then it took him 9 minutes to start breathing again. He has had many episodes where he has needed resuscitation and help to start breathing like this. Roman has a lot of problems with his airways and moving and he has a lot of secretions which he cannot manage himself, so he has to have regular suction to keep his airways clear. He is still in hospital waiting to have his home adapted and care team trained so that he can transfer home. Read Roman’s full story here.
The Myotubular Trust is funding new research to find a treatment or cure for Roman’s muscle condition, myotubular myopathy. There are some promising treatments in the pipeline as a result of their funding, and Sophie and Alan hope that one day soon these will be able to benefit Roman too.