I will be running an event on the 13th of August 12pm in Fermanagh, Northern Ireland to help raise funding for Daisy Garland and all the great work they do, the event is a LOS event ( every participant has to complete 4.2 miles on the hour every hour until there is only one runner remaining ) training started two weeks ago and only a few weeks to the big day. Your support will be greatly appreciated!

“This is what Isla’s Mum and Dad say”

When Isla was born we were unaware she had any medical conditions. Over time, we noticed a few little things that were significant with hindsight, but at the time were unremarkable, such as she had quite low muscle tone and couldn’t hold her head up well, she smiled later than you would typically expect and her eyes sometimes flickered around. By the time she was 4 months old, she was having episodes which we now know were myoclonic seizures. After a cluster of these, Isla was taken to A&E and admitted for investigations. It was then our world turned upside down as we realised there was something seriously wrong and we weren’t being sent home with a bottle of Calpol.

Eleven months later, after 2 EEG’s, an MRI scan, a lumbar puncture, many blood tests and a whole lot of worry; Isla was diagnosed with Glut1 Deficiency Syndrome.

This is a rare genetic condition which stops glucose being transported effectively to the brain. This leaves the brain without energy preventing it from functioning correctly and causing a range of neurological problems.

There is no cure for Glut1 Deficiency Syndrome. Some of the symptoms can be treated by following a medical ketogenic diet, which provides an alternative source of energy for the brain. The sooner a person is diagnosed and begins the diet, the better. Isla was 16 months old when she started keto via an NG tube and has since had gastrostomy surgery to ensure we can maintain such a strict diet for the rest of her life. Although she began the diet at a young age, it was still not soon enough as Isla developed acquired microcephaly, which indicates her brain growth has been impaired to such a point the effects are irreversible.

Isla is now 3 and her development is severely delayed, currently she is unable to walk or talk. However she usually finds a way to let us know what she wants to say! She adores her brother and sister, could sit and watch Mr Tumble for hours and her favourite toys are anything noisy! She has been through so much and always bounces back, we are so proud of her and everything she achieves.

We are grateful to Mark for raising money on behalf of The Daisy Garland as this charity was one of the first places we reached out to after Isla’s diagnosis and they helped us not to feel alone when we started navigating the absolute minefield that is medical keto! They have an excellent Facebook group where we know we can always go for advice. They also fund our amazing ketogenic dietician at Royal Manchester Children’s Hospital.
Within 24 hours of starting keto, Isla’s myoclonic seizures stopped. We know her brain is being fuelled in a way it couldn’t be without the diet and The Daisy Garland have played a big part in helping us to help Isla. Mark Mcleod