Update on Monday, October 31: A worker at Chailey Heritage ran the Beachy Head Marathon on Saturday and, thanks to his sponsors, has raised £435 for two disabled sisters he looks after.
From our original story on Thursday, October 27: Greg Czerniawski, 33, who lives with his partner Vicky Elms in Campbell Close, Uckfield, trained with Vicky’s father Mick, 65, from Nutley, who had run the marathon up to six times previously.
The two sisters Greg wants to help are Isabelle, eight, and Siena, two. Both suffer from severe epilepsy caused by an, as yet, undiagnosed condition.
Funds are being raised to get the girls to a specialist clinic in America which treats children with drug-resistant epilepsy.
Little Siena’s epilepsy is much worse than Isabelle’s and she has tried nine different anti-epileptic drugs to date and is on a special diet for her epilepsy but this doesn’t seem to be helping.
Both also need constant therapy to challenge their Global Development Delay and help them achieve maximum potential. This will include physiotherapy, occupational therapy, speech and language therapy, hydrotherapy and physiotherapy equipment.
Isabelle is learning to walk but cannot communicate. Siena cannot even sit up and is tube fed so debilitating is her epilepsy. With consistent therapy both girls can make progress and improve their quality of life, but with the incessant threat of severe uncontrolled epilepsy their lives are in danger every day.
Greg, who is originally from Poland, got hooked on running since meeting partner Vicky’s father. Before that he was a cyclist.
The Beachy Head Marathon will be his first, and he is hoping there will be more to come for this cause.
If he can get his sponsorship to £300 he has said he will run the marathon wearing a pink tutu and pink knee high socks. Currently he has just passed the £200 mark.
If you would like to help with the fund-raising please visit Greg’s JustGiving page.