World PVNH Day 2017

Today my post is dedicated to two very special people – Carole Aline and her incredible daughter Elise.

I have had the privilege of knowing Carole and her two beautiful daughters Elise and Lillianne for many years now. The girls attended my first ever nature art class in the Okanagan back in 2010 and have returned every year since. During this time my friendship with Carole has grown deeper.

Sadly a few years ago Elise was diagnosed with neurological heterotopia disorder, Subcortical Band Heterotopia. A very rare brain disorder. Some days little Elise can suffer several seizures, each one life threatening.

“This past Victoria Day weekend, our camping trip was cut short. Elise began to have seizures and we had to rush to the nearest hospital. Soon her condition worsened as she began to have cluster seizures and we had to be airlifted to the BC Children’s Hospital. Within 24 hours our little Elise had 45 seizures. This had been the worst episode to wrack my 7 year old girl’s body and one of many heart wrenching episodes she has had since 2013.”  – Carole

Elise’s condition effects the whole family. One of the things they love to do as a family is spend time outdoors in nature.

And for both the girls and Carole, nature art has been incredibly therapeutic.

Flowers by Elise

Many of us, including myself, take our health for granted and fritter so much of our time on things that do not really matter.

Elise is a gift, so precious and her incredible journey is a constant reminder of the miracle of life and how sacred life is.

May we all take a moment to be grateful for the gift of this new day and may I invite you to get creative in nature with the colours pink and yellow this coming week and help us raise awareness for all those suffering from PVNH.

Here are just a few simple nature based art activities you could do:

Pink Perfumed Potions  – A Sprinkling of Deliciousness

Pink and Yellow Fairies, a Fairy Home with Pink Accessories or a Yellow Dragons Laird featuring Yellow Accessories

Let your imagination go wild…

Or maybe you could create Pink or Yellow Pebble Art and Hot Rocks

Carole and her family are an inspiration to us all

Life is sometime very hard, almost unbearable and yet Carole carries on. She has taught me many things but it is her courage and perseverance and inner strength that shows how truly remarkable the human spirit can be.

Thank you Carole for who you are and for sharing your incredible daughters with me, I feel honored and blessed to have you in my life.

Let us pray that one day a cure can be found for Elise’s condition and others suffering from similar conditions.

May you all be blessed with good health and joy in your heart, with love and deep appreciation, Marghanita x

You can follow Elise’s journey on Facebook  Elise’s Rare Epilepsy Journey

 

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