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As most of you know Amelie has a rare neurological disorder called Sturge Weber Syndrome. This involves her having blood flow difficulties in the affected area of her brain, which can and has caused strokes and T.I.A's(mini strokes). She has complex structural focal Epilepsy and suffers with daily and nightly seizures - Hemiplegia, a one sided weakness which affects her mobility in turn causing hip and back pain, poor fine and gross motor skills - Sensory Processing Disorder - Memory Difficulty- Anxiety and Fatigue. 

Amelie began having seizures at 3 months old and was rushed to Epsom hospital via ambulance. She was in Status Epilepticus (a dangerously prolonged seizure without recovery) which lasted for 3 hours. The team at Epsom hospital worked tirelessly and saved her life. She was later transferred to the Evelina Children's Hospital to intensive care. She was diagnosed with Epilepsy and they took over her care. Over the next few years Amelie went in and out of hospital with prolonged seizures, some of which were life threatening and developmental issues became obvious as she was missing her motor milestones.

Amelie has many seizure types with drop seizures affecting her every day and focal (one sided) seizures every few weeks. Drop seizures are resistant to medication and can be dangerous due to the unpredictable sporadic nature of them.  Having seizures at night puts her at an increased risk of SUDEP (Sudden Unexplained Death In Epilepsy). 

At the age of two Amelie was diagnosed with type 3 Sturge Weber Syndrome following an MRI during an inpatient stay due to a stroke and seizures. This was because she does not have a Port White Stain or birthmark, that is associated with the more common types 1 and 2. 

Since Amelie was 3 months old, she has been working hard with physiotherapists and occupational therapists. She has had countless ambulance rides, hospital admissions, neurology appointments,  stroke clinic appointments, MRI’s, CT scans, EEGs, Sleep studies,  blood tests, GP appointments and  other therapy sessions. Regular appointments for medications, audiology and opthalmology. Amelie is the most amazing, brave and determined little girl who makes me proud every single day. 

Soon after diagnosis, I found the facebook group for the charity Sturge Weber UK who welcomed me in and whose advice and support ever since have and continue to be invaluable to me. 

They are a volunteer run charity who rely solely on fundraising and donations. This goes towards 

• Providing support and information on different aspects of the syndrome and to raise both public and professional awareness of the condition.
• To promote medical research into the causes and treatment of this syndrome.
• A Family Weekend is organised every eighteen months when doctors and other professionals talk about relevant topics.
• A Newsletter is produced and information leaflets are available.

I am holding a fundraising event on behalf of Amelie for Sturge Weber UK on the 16th December. We would love to see you there but if you are unable to attend and wish to donate to this charity close to our hearts then please see below. 

Thank you, Amelie's mummy xxx