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Harriet`s brother Michael had contracted the chickenpox  virus in the first week in June and became very tired, run down and slept a lot of the time. He was kept well away from Harriet and our other children, as we were conscious that if Harriet caught the virus, she would have...

Last week was a busy week for Harriet and ourselves, we had to attend the Queens Medical Center in Nottingham, for a neurological review and a spinal review and had to give blood samples for the genetic tests.Tuesday 3rd June 2014 - we arrived at the Queen's Medical Center in Nottingham...

If someone had told me 5 years ago, that I would be writing a blog to mark Harriet`s 5th Birthday, I would have said that it would not have been possible. All the consultant`s, doctors and nurses were telling us that Harriet had a life limiting disease and to make the...

It is nearly 4 years since Harriet was last seen by the genetics consultant Dr. Mohnish Suri and his team, at the Nottingham City Hospital. Back then we thought genetic counselling was simply talking about living with a child that had some unknown genetic or undiagnosed condition, but we quickly realised...

After Harriet`s massive seizure in October, we were concerned that Harriet was now facing a life threatening seizures without having any sort of plan in place.A few weeks past and Harriet had a fourth seizure; we administered the Buccolam Midazolam, which controlled the seizure while we called for the ambulance. The...