Dravet Syndrome is a very rare genetic disorder which occurs in 1:20,000 to 1:40,000 births. It is the result of a fault in just one gene. It is believed that the genetic fault leads to abnormal functioning of the sodium ion channels in the brain which causes the seizures. Children affected by Dravet Syndrome experience behavioural and developmental delays, difficulties with speech and balance and experience chronic sleep disturbance.
Paige who is now three, was seven months old when she had her first seizure. This was the beginning of many more that would follow in the coming months and years. Eight weeks on from her first seizure, Paige experienced a seizure so severe that it lasted two hours and she had to be intubated to allow her to breath. It was at this point that Paige was diagnosed with Epilepsy and mum Samantha decided to give up her job as a bar manager to focus on looking after Paige.
It was an incredibly difficult time for Paige’s family, they would spend a week in hospital and then have three to four weeks at home before Paige was readmitted. The seizures were so bad, Paige would stop breathing which meant her family were scared to take her anywhere, even the slightest temperature change could trigger a seizure making the simplest of activities from having a bath to washing her hands impossible.
Paige’s diagnosis eventually came when she was a year old and it came as a huge shock and blow for her family. Paige requires 24 hour monitoring by people who are trained to look after her medical needs, because of this her parents haven’t been out together on their own since she was seven months old.
Now, nearly three years on, Paige goes to pre-school for five hours a week where she loves playing with her friends, singing, playing on the iPad and is a huge Peppa Pig and Frozen fan! Thanks to the tenacity of her family, her pre-school now have their own resuscitation equipment as Paige’s seizures can occur out of the blue and without warning.
Paige is also extremely close to her four year old sister Evie-Mae who is now an integral part of Paige’s care, fetching things for mum, Samantha when needed.
The family have been heavily supported by Dravet Syndrome UK who this year are a Jeans for Genes benefitting charity. Our grant raised by you on Jeans for Genes Day will help fund the development of a new website which will provide advice and act as a point of reference for families and medical professionals at any time day or night. The website will provide an incredible support system for children like Paige and their families.
On behalf of all of the children and their families that we are able to support thanks to your kind generosity, we would like to say the biggest thank you to everyone who took part in Jeans for Genes Day 2016!
P.S. If you haven’t had a chance to hold a Jeans for Genes Day yet, there is still time to sign-up for your free fundraising pack and overdo it in denim!