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Our Warriors

Since we started our CRELD1 journey over six years ago, we have been blessed to find a small community of families that have had their children diagnosed with the same condition. It was only by pure chance that we were introduced to the CRELD1 Warriors Facebook Group, which now has 14 families. 


It is through their love, support and stories that we remain hopeful for a better life for all the children that have been diagnosed. We also forever remember our dear Warriors that we have sadly lost - Hayden, Samuel, Ayla, Lola, Hannah, Matilda and Zoë. 

CRELD1 is extremely rare, but you are not alone. Welcome to our family! Here you can meet some of our CRELD1 Warriors. 


Levi is a mischievous boy who never stops moving! He loves spinning wheels and lights of any kind. You never know if he’s going to pull your hair or give you a hug, but it’s a risk worth taking: he gives great hugs.


Alfie is such a happy, cheeky little man. He loves nothing more than laying on his tummy all day playing with his toys, kicking his legs and his laugh is infectious! His favourite pass-time is snuggling with his older sister Daisy. 



Colton is one of the strongest, most resilient boys we’ve ever met. He smiles and coos, loves to hold hands and be snuggled by his three older siblings.


Zoë was resilient, strong, sweet and won over so many hearts with her smile and tiny glasses!



Addie is our first adult CRELD1 warrior and she's such a huge inspiration to us all. She's overcome so many challenges and continues to do so with a smile on her face. 


Matilda was a very cheeky personality. She loved animals, spinny toys and her friends and family.



Ray is growing into such a strong, ambitious and smart boy who loves to keep active! But don't let that fool you, he still loves a cuddle!


Daxton is such a happy and determined little soul with a cheeky grin. He loves to roll around on his bed and play with his toys and especially loves cuddles with his family. 



Lola or 'Lollipop' was a beautiful little soul who brought so much to our lives. She loved to be tickled and taken for long walks and knew exactly how to get what she wanted! She is now dancing with the fairies in heaven.



Hayden was a sweet girl who loved nothing more than being held and cuddled by her family. Her smile was infectious and her laugh could light up any room. She is now resting in heaven, lighting our skies and our sunsets.



Ayla was a cheeky little girl with a beautiful smile. Her nickname was giggle monster as she was always smiling and laughing. She sadly went to play in the stars aged 17 months


Samuel was our happy little man with the bright blue eyes. He filled our lives with love and is now smiling over us from above. 

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