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LoveQuiltsUK - Rory P's quilt

Rory P's quilt    (Quilt Closed)

Illness: Dravet Syndrome

Theme: Trains

Date opened: 9th Jun 2021
Date closed: 19th Jun 2021
Deadline: 26th Oct 2021

Photo of Rory P

Child Interests

Trains, he absolutely loves trains. He infact like all types of transport, trams, cars, vans, lorries, police cars, ambulances, fire engines, diggers but trains are his favourite. He doesn't really have a favourite color


Rory was a healthy baby boy born by elective cesarean. Four months after he was born he had a seizure that was difficult to stop, he was kept in hospital for two weeks for tests to see why he had such a difficult seizure. All tests came back normal and we were sent home hoping this was a one off. However, 6 weeks after Rory had another difficult seizure then another and was given epilim. As the months went on, Rory's seizures came more often and other seizures appeared. When Rory was 2 1/2 we were told he fits the clinical picture for Dravet syndrome, a rare form of severe epilepsy, this was confirmed after a positive blood test for a faulty gene associated with the sodium channels.

Rory is 16 years old now and currently taking 4 anti epileptic drugs, but despite this he continues to have seizures, mostly nocturnal. However, we need to be careful of his trggers that can cause prolonged seizures. These triggers things such as becoming over heated, over excited, illness and photosensitivity. He has severe learning difficulties, speech and language difficulties and mobility problems. He needs one to one, sometimes two to one support at a times to keep him safe from harm.

Rory is a happy boy and everyone who meets him adores him, he is full of life and makes others happy. He amazes me how he bounces back from some of his horrible seizures. He can have seizures that cluster and go on for days and emergency meds don't seem to help much but after a few days of recovery he is laughing and playing.


1.Climbing Goats design Realistic locomotive Steam TrainStitcher: Lorna Simpson, Southampton, UK
In Progress

2.Side view of cartoon steam train locomotive in greenStitcher: Emma Swift, Aberdeen, UK
In Progress

3.LQ files by Christina McDonald Modern hydro flex trainStitcher: Laura Anderson, Chard, Somerset, UK
In Progress

4.Blue scottish train from filesStitcher: Gail, Lochgelly, Scotland
In Progress

5.Beth Filmer LQ Files British Rail Class 378 - Blue & YellowStitcher: EE(Beth)Filmer, Adelaide, Australia
In Progress

6.Anchor kit - "Train" Steam train moving through the countrysideStitcher: Katie, York, England
In Progress

7.LQ files British rail class 377Stitcher: Emma Robson, Doncaster, England
In Progress

8.LQ files London Underground 1992 stock train Stitcher: Christine Mennie, Aberdeen, UK
In Progress

9.ProbertProStitch Etsy Stephensons RocketStitcher: Sarah, Gosport, UK
In Progress

10.Tram as discussedStitcher: Emily, London, England
In Progress

11.TGV (Train de Grande Vitesse), own designStitcher: Elizabeth, Shipley, UK
In Progress

12.Label Stitcher: Jodie Balaam, Lawshall, England
In Progress

Squares received

None yet. (Quilt opened on 9th Jun 2021)

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