This year Chelsea Pre-Prep & Nursery are raising money for Epilepsy Research UK in a variety of ways. To join in with the bake sales, raffles and dress up days, the staff are also training for the challenge of running the British 10K through London in July. The 12 staff members are aiming for a combined total for the 120 kilometres in under 12 hours. We are asking for all your help, participation and generosity in helping us raise money for this cause. This year it is particularly personal for us as it involves raising money for ERUK which is helping take care of a brave little girl who was once hoping to be a student at CPPN. Her story is written beautifully by her parents below. We ask that you please take a few minutes to read her amazingly spirited story.
“This is Lucia (Loo-sha) Butterworth, the older sister to Oliver (Miss Leonie’s class) and baby Henry. She is our five and a half year old perfect girl. Our perfect girl who has never crawled, walked, spoken a single word, feeds via a gastrostomy and preservers through periods of unrelenting seizures with a strength and resolve that is both heart warming and heart breaking every single day.
When we gave birth to our beautiful girl in July 2006, she was healthy and the first three months of her life was just as we naturally expected. Then a few nights following her first set of routine vaccines she suffered a massive tonic seizure that miraculously did not end her life and marked the beginning of a brand new life. A life that she has tolerated with such grace and determination that we, as her parents, want nothing else but to fight the battle alongside her.
We are asking that you join us in this campaign to raise funds for Epilepsy Research UK, a no frills charity set up for the sole purpose of funding laboratory research into one of the most persistently challenging ailments of neurology, seizures. Because even today, after five years of experimental treatments run by the finest neurologists in both America and the UK, Lucia’s condition remains a complete mystery, undiagnosed and bewildering.
People often sympathize that Lucia’s condition remains undiagnosed, and how additionally painful this must be, but in fact the opposite is true. That Lucia has no found genetic abnormality or mitochondrial disorder and does not fit within the perimeters of any of the hundreds of known neurological syndromes, leaves us instead with infinite hope. A hope that someday someone will discover a way to improve Lucia’s life and allow her even a portion of the joy and nonchalance that most little girls Lucia’s age naturally take for granted. It is through the financing of Epilepsy Research UK that Lucia might find her voice.
We always expected that we would be proud parents; proud that our daughter was so clever, athletic or sensitive. Or secretively proud that she was so beautiful and that her future held all the thousands of charms that we are in a position to offer. But instead, our pride is of a variety that we never knew existed. A type of pride so intense that everything else seems insignificant. We are proud of her bravery, unrelenting strength and undying spirit. And of the hundreds of things we have learned as Lucia’s parents we know this for certain; if anyone can be patient enough for a cure it’s our little girl.
Thank you for helping to support our hope through Epilepsy Research UK.”
With sincere thanks Katherine & Adrian Butterworth