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LISTEN "You don't expect to have to bury your children"

Everest for Evie 1

5:33am 13th October 2017

It's got to be every West Norfolk parent's nightmare.

Pete Lavvaf from Snettisham should be planning how his little girl Evie will grow up.

But instead he was told his daughter has a rare genetic disorder.

Sadly rhizomelic chondrodysplasia punctata type-3 is terminal and it's left Evie with a hole in her heart and growing cataracts.

She also has barely grown since was born and the three year old weighs just over 11 pounds.

Pete tells us what they've been through:

Well Pete really has gone the distance for his little girl!

We were caught up with him after he completed his Everest for Evie campaign.

He climbed all the way up to the base camp of the mountain all to make sure more families going through this get the help they need.

Pete is fundraising for Genetic Disorders UK after all they support they gave him and Evie after she was diagnosed.

Click here to donate to this incredible cause

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