Piper Grae Crawford

Who is Piper you may ask? Piper is my god sister. There is something so special about Pippy. She is the most affectionate, lovable, darling little girl you’ll ever meet. She’ll make you laugh until you’re in stitches and as you can probably already tell I adore her.

Piper is 4 and she suffers from PCDH19, PCDH19 Epilepsy is a rare epilepsy syndrome with early onset seizures, cognitive and sensory delays, and behavioral problems. It is caused by a change or mutation of the PCDH19 gene found on the X chromosome. The PCDH19 gene makes a protein (called protocadherin 19) which helps cells in the brain communicate. This disease strongly affects her everyday life and strengths and abilities to get through life. My god parents Sara and Heath Crawford have founded a foundation called ‘The Pip.Ilepsy Foundation’ which is a non-profit organisation to raise awareness funds and support for not just Piper but many children with epilepsy.. Piper has had 85 nights within the last 6 months in RCH Intensive care unit which has effected my families everyday life stresses immensely.

Piper has currently been admitted back into the Intesive Care Unit, and our family is just shattered that epilepsy is winning this fight. Piper is honestly the strongest little four year old, strongest person I’ve ever met. The stregth in her eyes is honestly so inspiring. When you look into Pipers beautiful blue eyes, you just want to cuddle her. I genuinely think she is an angel. With my own health issues, she inspires me to be the best possible version of myself I can be.

From my side of things, It honestly breaks every part of my heart so see her so drugged up from the medicines and see her in so much pain. Witnessing seizures i wouldn’t wish on anyone, let alone experiencing them herself. As tears fall down my cheeks I wish for everyone reading this to have strength like this little girl.

I love you my Piper, forever and always our memories stay in my heart.

Love, Chloe x