"To help everyone understand how important The Daisy Garland is to me, I would like to share the story of our journey over the last year...

Not long into January 2019, our daughter Ruby who is just 2 year’s old started having 'vacant episodes' I mentioned it to our doctor who shrugged it off. At the end of February, Ruby’s episodes had become more frequent.  We went back to the doctor who thought they could be due to day-dreaming or tiredness, but advised me to monitor Ruby to see if a pattern emerged. A week later I was holding Ruby in my arms and she started to tremble and went stiff, her eyes were vacant and looked almost black and her skin turned grey: I held her close and told her everything was ok.  It lasted for about 5 seconds, although it felt much, much longer. This was her first noticeable seizure.  That day, that one moment, that first seizure changed our lives. 

Ruby was admitted to hospital for an MRI* scan, lumber puncture** and blood tests, all of which showed nothing. But now the seizures were regular and happening around 10 times a day. Ruby then had an EEG*** after which the doctor gave us a diagnosis of generalised epilepsy disorder.  Although we were relieved to know what was wrong with our gorgeous little girl, my heart broke as I knew this was going to change our lives forever. On the 14th March Ruby started anticonvulsant drug treatment, since then Ruby has had medication increases and changes, all of which failed to control her seizures. 

Many of Ruby's seizures occur during the night so we hardly sleep. We urgently needed a seizure monitor, which helps to reduce the risk of SUDEP [sudden unexpected death in epilepsy], but these monitors are incredibly expensive and we just didn't have the money.  Thankfully we found The Daisy Garland charity who sent us a monitor application form and a few weeks later we were lucky enough to be awarded a night time breathing monitor grant and someone from The Daisy team regularly checks in to see how we are doing, which is really appreciated. 

If Ruby’s new medication isn’t effective, the ketogenic diet will be our next line of treatment and we know that the Daisy Garland will be there to help us with the diet.  I am also going to join their Time4Me parent support group as they have set one up in our area to help families like ours.   It’s hard to put into words just how much we appreciate the support of this amazing charity.

We still we don’t understand why Ruby's seizures started but with all the help and support of The Daisy Garland we feel we are going into 2020 with the chance of her becoming seizure free. I wish for nothing more than to have Ruby’s health back and for her to be the happy, confident and content little girl she was before the epilepsy took over. Epilepsy is more complex than you could ever imagine.

* Magnetic resonance imaging (MRI) is a type of scan that uses strong magnetic fields and radio waves to produce detailed images of the inside of the body and can be used to examine almost any part of the body, including the brain and spinal cord.

**A lumbar puncture is a medical procedure where a needle is inserted into the lower part of the spine to test for conditions affecting the brain, spinal cord or other parts of the nervous system.

*** An electroencephalogram (EEG) is a test used to evaluate the electrical activity in the brain. Brain cells communicate with each other through electrical impulses. An EEG can be used to help detect potential problems associated with this activity. An EEG tracks and records brain wave patterns.