Our Stories - Ruairidh Murphy Story

Amanda Murphy spends a lot of time in her car, regularly ferrying one-year-old son Ruairidh to vital hospital appointments.

The lad suffers from the rare West Syndrome, a condition which impairs a child’s development and appears in just 15 Scottish births a year.

West Syndrome manifests itself  in the form of multiple epileptic seizures, sometimes up to 200 per day.

Hospital trips were often uncomfortable experiences for both mother and son.  Ruairidh’s head would slump to the left  in his car seat and Amanda would struggle to concentrate on the road because her baby would scream and scream in his discomfort.

Such visits are now much more enjoyable affairs after the Teddy Bear Foundation bought the family a “Kiddy Comfort Pro” car seat for almost £200.

Said Amanda:”It’s so nice to have a happy child in the back now, rather than a screaming one.

“The new chair gives him so much more support.  He can now fall asleep in five minutes  and still his head gets support from the seat.

“He used to scream for ages in his old car seat.  The difference this has made to both of us is fantastic.

“The next size up for a standard chair would have been back-facing but this way I can adjust my mirror and keep an eye on him front-on.

“Because it can adjust as well, it will do him until he is 12.”

Ruairidh has been to two London hospitals - St Thomas’s and Great Ormond Street – to see if medics can get to the bottom of his condition and come up with an effective form of treatment.

The most successful spell without seizures lasted 10 weeks after he was put on a high-dose steroid treatment. 

“I don’t know how it works,” said Amanda.  “It’s got something to do with the receptors in his brain.

“But with perfect timing, the seizures started again last Christmas Eve.

“They come in clusters, sometimes as many as 40 or 50 in a single episode.  He can now suffer five or six episodes a day.”

After coming off the steroid treatment, Ruairidh has been allowed to go back on it.  We wish him many happy miles in his new car seat.

Ruairidh Murphy

All quiet now.  Ruairidh Murphy in his new car seat.

Ruairidh Murphy

Mum says journeys are much more pleasant experiences. Looks like Ruairidh agrees.

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