Journey so far’s been full of challenges

Jessica’s mum Claire’s description of Ring Chromosome 20 Syndrome being“a progressive illness”that“you just don’t know how it is going to develop”is exemplified by the challenging journey the youngster has been on since diagnosis.

Prior to her condition being confirmed in August 2015, Jessica was“a very fit and active little girl”.

But, almost overnight, her seizure activity increased to up-to-40 per day, which put a massive strain on her body and saw her sleep for much of the time.

In October 2015, in consultation with Jessica’s neurologist, her parents Claire and Chris chose to withdraw as many of the anti-epileptic drugs (AEDs) Jessica was taking as possible and explore alternative treatment methods.

A month later, Jessica began her ketogenic diet, with the support of her neurologist and dietician at the Royal Hospital for Children in Glasgow.

Jessica“adapted well”to her change in diet, with mum Claire saying:“The challenge of the loss of her normal food choices and treats, and every meal being weighed and consumed with a 50 per cent fat content, was met head-on.

“Since starting the diet, Jessica’s visible seizure activity has now reduced to 10-to-15 visible status seizures per day.

“Status seizures that previously could last up to 30 minutes have almost disappeared and complex partial seizures tend not to last any longer than 30 seconds.”

Claire added:“We can’t emphasise enough that we got our little girl back; her energy levels improved, she was much brighter and alert and was back to being the active little girl she once was, playing with her football teams and attending dance classes again.

“We realise, however, that the diet can only be tolerated by the body for a limited period and, as such, we require a long-term treatment for the syndrome.”