Team Koen Muscular Dystrophy Western Australia
Team Koen
Muscular Dystrophy Western Australia
Team Koen
Team Koen

Team Koen's page has now expired

428 days ago, Team Koen created this page in support of Muscular Dystrophy Western Australia.

During this time, the 38 members of Team Koen gave everything:

  • Shared their page with everyone they could.

  • Received 249 donations from generous family and friends.

  • Raised $18,409.14.

Our Story

In May 2017 my husband Mark and I had our baby boy Koen after a rough final month (32-36 weeks) with polyhydramnios and regular amniotic drains. Koen was born with Myotubular Myopathy, a rare (1:50,000) genetic condition that we were not aware of during the pregnancy or even after he was born (we are not carriers). Koen’s very rare neuromuscular condition meant that he had reduced muscle tone and suffered respiratory distress, passing away after 12 days. It was utterly heartbreaking to lose our baby boy and on what would have been his first birthday (25/05) we wanted to raise some money for other kids with rare genetic diseases, specifically for MDWA who support families and individuals affected by Myotubular Myopathy.

Team Members

Thank You

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HBF Run for a Reason 2018

27 May 2018 Visit this campaign

Donations Summary

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Muscular Dystrophy Western Australia