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Vaara was our Rainbow baby after we lost our first daughter Amaari in August 2011. We were over the moon when she was born, she was perfect and we couldn’t be happier. She was developing and doing all the things that a normal baby would do until she was around 6 months when she stared having seizures. She was diagnosed as having Infantile Spasms a rare form of childhood epilepsy and was having up to 10 seizures a day. 

The seizures took nearly 6 months to control using various drugs and by this time, they had taken a real toll on her little body. She lost all the skills she had learnt and was unable to learn anything new. The last few years have been tough for us as parents and at times heart breaking to see our little girl go through so much. 

We’ve had various ups and downs, including 18 months of being seizure free, hundreds of hospital visits, many sleepless nights and trying a number of different medications with no seizure control. 

In May 2015, my husband and I decided to get a second opinion regarding her epilepsy and asked our GP for a referral to the Evelina Hospital in London. Up until then we were being treated and seen at our local hospital - we were so glad we did! They repeated all of Vaara’s tests including EEGs, MRI, bloods etc… and found out that she has extensive cortical dysplasia. She was then put on the surgery pathway at Great Ormond Street Hospital to see if brain surgery was an option to help control her epilepsy. It was a long road and wait involving two video telemetaries, a PET scan, an invasive SEEG and a specialised MEG scan abroad only to be told that they didn’t think that Vaara could be operated on. 

As heartbreaking as this was to hear, there was still hope and we were told to consider Vagus Nerve Stimulation (VNS) for her. In May 2019 we made the decision to put Vaara on the waiting list for the Vagus Nerve Stimulation (VNS) surgery as a way to get some control of her seizures. Before making the decision to have the device fitted, I spoke to a number of HOPE parents about their experiences as well as a session with the surgeon at Kings Hospital who would be performing the surgery. Vaara had the device fitted in September 2019. The procedure was straight forward and the recovery was quicker than we expected. She was bouncing around and back to herself within 5 days. We are currently in the process of optimising the settings on the device to get them to a therapeutic level for Vaara. Early indications show that the seizures are less aggressive than they used to be, her seizure recovery seems to be quicker and she has not had any other negative side effects. Still early days for us but the future is looking brighter.

Vaara is now 7 years old and she is a happy, determined little girl and is learning new things every day. My little purple warrior!

Written in 2020

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