Manx mum fundraising for kids to experience normal childhood activities

Seven people on the Isle of Man has EPP

This week marks Porphyria Awareness Week - an international campaign to raise awareness of a rare blood disease which prevents people from going out in the sun.

Here on Island there are seven people who suffer with a form of porphyria. 

What is it?

With summer fast approaching people will be spending more time outside however for those with the rare blood disease, it means more time indoors or covered with layers of clothes. 

Natassja Chadwick's two children aged 12 and 10 have been diagnosed with erythropoietic protoporphyria (EPP) - which causes them to react to sunlight: 

"In the summer they spend their time inside with the curtains closed and fans on to keep them safe. They can't go to the beach or park with friends and life can be isolating" - Natassja Chadwick

The British Prophyria Association is hoping to create a night summer camp for those with EPP so their children can have the same childhood experience as their peers.

Natassja is fundraising on the Island: 

Those wanting to donate can do so here.

You can listen to the full interview with Natassja here.