Thanks for taking time to read my fund-raising page. I am
running my first (and maybe my last depending how torturous it is!) marathon, hoping to raise as much money as possible for the fantastic work Sparks Charity do.

Sparks fund much needed research into treatments for children with rare conditions. Time really is of the essence with this research when you consider the sobering thought that 1 in 3 children with a rare condition won’t live to see their 5^th birthday.

As you may know, my son, Sebastian suffers from one these
rare conditions that Sparks’ research looks to help. Sebastian suffers from Opsoclonus Myoclonus Syndrome AKA Dancing Eye Syndrome. His symptoms started shortly after his 1^st birthday, which we later learned were the result of a fairly common virus he had contracted. Not much is known about OMS but we do know is it effects roughly 1 in 10 million children, and usually caused by a neuroblastoma, Sebastian was lucky in this regard. OMS is a disorder that effects the nervous system, manifesting itself with multi directional eye movements, involuntary muscle jerks, uncoordinated movement, irritability and sleep disturbance. Nearly a year on since showing the first symptoms and having every test imaginable carried out including EEG’s, MRI’s, MIBG’s, X-rays and lumber punctures, research has led us down a treatment plan that has greatly improved his quality of life for the time being but with the very real possibility of regression always looming over our heads. The simple truth is we don’t know what Sebastian’s future may hold and how much this terrible condition may effect his life.

What we do know though is that through research and medical
advancements, hope can be brought to families such as ours, as well as others whose children are battling terrible conditions. Please spare what ever you can afford to help this fantastic charity along with giving me a kick up the backside as I start my 6 month journey from 18 stone beer lover to a lean mean marathon running machine!

Sensible as always, I’ve chosen a nice easy marathon for my
first one….a trail marathon…..round a lake…..in March……at night!

Sparks website: https://www.sparks.org.uk/