Violets 50K in May

Hey everyone, this is 8-year-old Violet who was born with a rare genetic condition called Tuberous Sclerosis Complex (TSC). TSC causes benign Tumours to grow in the brain and other vital organs such as the Kidneys, Heart, Eyes, skin and lungs in girls, Autism, Epilepsy and developmental delay. Violet was diagnosed at 5 months of age following Infantile Spasms that were misdiagnosed as Colic by the GP. Infantile Spasms are a type of seizure that can be life-threatening and cause brain damage if not treated. We were lucky enough to catch these seizures in time which were then treated with medication.

As Violet grew older, she was diagnosed with Epilepsy and her seizures turned into Myoclonic and Tonic Clonic seizures with an occasional Grand Mal but we're now thankful that her medication is effective and Violet is now seizure-free.

Violet is a happy little girl who regularly attends hospital to monitor the growth of her Brain and Kidney tumours. She doesn't understand the condition, nor does she know why she has to attend the hospital on a regular basis, this is her normal lifestyle.

Violet has just started a new medication that is usually used to treat Kidney cancer but works well with her condition. This is to help shrink her growing tumours and although there are some common side effects of this medicine, however we appreciate that she is just feeling lethargic at the moment.

Violet (and I) have decided to walk 50K in May mainly to raise awareness of TSC and also to raise £1000 for Nottingham Childrens Hospital and £1000 for Tuberous Sclerosis (total £2000).

You may see us walking around Lowdham and the surrounding areas in May and I'm sure Violet would appreciate a wave to keep us going! Please join our Facebook Page for support and encouragement for Violet.. GO VIOLET GO! https://www.facebook.com/groups/6969242543093049/permalink/6969242566426380/

Thankyou :)