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For families whose children live with Paediatric and Primary Lymphoedema

Blog posts September 2020

One families journey of living with a rare disease

An interview with Sebastian’s mother by Pernille Henriksen (@the_lympha)

Published by Gaynor Leech: Founder of L-W-O Community

 

The first few steps in the journey of a rare disease

 

It was March 2018 when my youngest son Sebastian was born. He has congenital lymphoedema. Nobody in the hos…

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Successful First Month

When you start a new project there is always that question “Have I done enough?”, even though you know you have put hours into the research and presentation there are always anxious moments.  With our new family’s website launched on 31st July 2020 there was no waiting with bated breath the h…

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