Fundraising for Sienna

Jayson Flegg recently heard about a local young girl who has suffered the most horrendous start in life due to epilepsy and with the permission of her family, wanted to share her story.

Sienna was born in 2006 – seemingly healthy with no issues, when suddenly at 3 months old her family noticed she was ‘jerking’ a lot and not responding to them in any way. Her health then rapidly declined. After a series of tests at Bucks Royal Free Hospital it was discovered that the jerks were actually epileptic fits and she was having over 300 fits per day. She was diagnosed with West Syndrome and referred to Great Ormond Street Hospital. Due to the activity on her young brain it left no time to develop, to learn, or grow, instead she regressed back to being a new born baby and became blind due to the amount of seizures.

Sienna was prescribed many drugs and the family researched alternative remedies for her seizures such as a diet called Ketogenic diet, a very strict diet cutting out all carbohydrates. At this time Sienna was fed via a tube directly into her stomach and after 9 months her seizures were reduced from 300 per day to 3 per week. Her family were delighted and Sienna started to develop to a point where her medication was reduced and they had their baby back!

Today, Sienna’s condition is manageable with the help of some medication and supportive devices, although she cannot speak, walk or do any of the usual things most 8 year old’s can do. Despite all this, she is a very brave and happy young girl.

She enjoys swimming and music but most of all loves being out and about! Her current NHS wheelchair restricts her from going out to woodlands or beaches and she has never been out in the snow. Her family have found a specialist chair with a padded system which will enable her to go anywhere, be more comfortable and support her spine. Unfortunately, these chairs costs £6,300 and aren’t available on the NHS.

After learning about this tragic story, Jayson offered to provide £1,500 towards the cost of the chair for Sienna. Supporting epilepsy charitable causes is very close to his heart due to the sudden and tragic loss of his brother, Ben, due to the condition.

Her mum was extremely grateful for our support, “The general public have been overwhelmingly generous! And I have been brought to tears on a number of occasions! Your donation will help us buy her new chair! Sienna will most likely always have seizures, may never walk but she will always know how amazing humans really can be! Epilepsy is not known well by most and takes so many different forms and levels. We will always fight for a cure, and will be doing lots of charity events to help in the future. Thank you.”

In addition to our donation, Jayson and the team at Flegg’s will be taking part in charity runs and activities, such as tough mudder, specifically to raise more for Sienna and her family.

Please share this story with people you know and encourage others to support the Epilepsy Society in any way possible. If you would like to hear more about Sienna’s fundraising campaign, please contact us on 01296 630234.