Harriet C's quilt    (Quilt Completed)

Thank you

Please thank everyone that contributed to the quilt for Harriet - it is amazing. It has taken me a little while but I have finally managed to get some photographs of Harriet with her quilt. I have attached a few

Finished photos

Individual squares

Card

Stitched by: Pat Brown

Biography

We first noticed something wasn’t right when Harriet was around 2 and half months old. Initial leg shaking, then before we knew it she began seizing on a very regular basis. We had constant visits to hospital usually in an ambulance with seizures lasting between 8 and 20 minutes long. There were regular hospital admissions with lots of different drugs tried. Nothing seemed to control the episodes and with each medication the seizures seemed to change but not stop. We tried the Ketogenic diet with some success, seizures lasted less than a minute, but after 2 years its effect reduced and the seizures became more frequent. Harriet’s general development by this stage was really regressing. Harriet suffered from a lot of infections which meant more and worse seizures. At 3 yrs old she had her tonsils removed and this helped a little. Harriet was tested for Dravet Syndrome around the age of four and was found to have a deletion in the SCNIA gene. Harriet was then given stiripentol. She continues to suffer with severe epilepsy, severe learning disabilities and also has a diagnosis of autism. Harriet functions around the age of an 18 month old child. She is unsteady on her feet and uses a wheel chair quite a lot now. She has clear onset of crouch-gait and requires support with everything that she does. She still has a lot of seizures and is about to try a new medication so we have some hope again.