The story of Litz
My daughter Sian was born on April 7th, 1984 with a port wine birth mark on her face and across the top centre of her head. As far as we knew that was all there was to it, 12 years later when she suffered a stroke and a brain bleed she was subsequently diagnosed with a rare condition known as Sturge Weber Syndrome.
From this point Sian suffered life threatening seizures, although technically not epilepsy, she had to deal with crippling migraine headaches and frequently losing all the feeling in her left side so she became paralysed.
Sian was an incredibly strong individual who fought against this disorder relentlessly for years, she gave birth to two daughters, Jessica in 2001 and Rhiannon in 2004. Sian suffered severe mood swings and depressions from a combination of SWS, the medication she had to take and the damage that had been caused to her brain over the years with the continual severe seizures.
Sian lived her life as fully as she could possibly have done given the constraints of not being able to work because no employer could deal with her seizures. Sadly also Sian could never drive because of the unpredictability of her illness.
Tragically on December 9th, 2014 following a couple of days of seizures Sian died in bed alone. On her death certificate the post-mortem concluded death was:
A) Status Epilepticus as a result of;
B) Cerebral hemorrhage due to;
C) Sturge Weber Syndrome.
Our hearts are broken but we are so fortunate to have Sian’s daughters Jessica now 14 and Rhiannon 10 as a legacy from Sian.
I embarked on fund raising and awareness of Sturge Weber Syndrome shortly after Sian’s passing and I will continue to do so in her name and her memory.