The first year of a baby’s life is supposed to be filled with joy and wonderfully happy memories; for the Byrne family, however, these past few months have been marked by heartbreak, struggle and suffering.
Natalie and Matthew Byrne have set up a special organisation, The Darcey Daydream Foundation, in memory of their beloved daughter Darcey Elizabeth who passed away last month, at eight months.
In the midst of their grief, these amazing parents have had to stay strong, not only for parents everywhere who share their circumstances but also Darcey’s twin, Georgie.
Little Georgie is a very sick little girl, who battles daily with intractable epilepsy, suffering up to 100 seizures on some days.
Mum Natalie explained: “Georgie is a very poorly little girl. She has intractable epilepsy which in short means that current drugs are not helping her. She has up to 100 (sometimes more) seizures each day. She experiences a great deal of pain. We are repeatedly hearing that Georgie's life expectancy is not good. Which is largely due to the uncontrollability of the epilepsy...And I understand what they are saying, but there is a LONG way to go yet. And we WILL get Georgie seizure free. And prove them wrong.”
Rallying to raise awareness and funds for other families in the same situation as them, mum Natalie has issued a heartfelt appeal for followers to reach out and help those struggling through an epilepsy diagnosis.
“We will not give up the fight to save Darcey's twin. Our Gorgeous Georgie. And not only save her, but to give her the best possible life and chance at seizure freedom…In Darcey's memory, we intend to set up a Trust. The funds raised for The Darcey Daydream Foundation will initially be predominantly for the treatment we need for Georgie. However, this isn't just about Georgie, it's about all the other babies who are repeatedly failed by the system we call the NHS. They deserve better. And we will do everything in our power to make a difference to them too,” added Natalie.
You can follow The Darcey Daydream Foundation’s story, and get information about upcoming campaigns and events on the Facebook page, through this link, or at www.darceydaydreamfoundation.com.
