$13,806.49
Maddy and Mark Muscular Dystrophy Western Australia
Maddy and Mark
$13,806.49
Muscular Dystrophy Western Australia
Maddy and Mark
Maddy and Mark

Madeleine's page has now expired

272 days ago, Madeleine created this page in support of Muscular Dystrophy Western Australia.

With the help of Team Koen, Madeleine gave everything:

  • Shared their page with everyone they could.

  • Received 163 donations from generous family and friends.

  • Raised $13,806.49.

My 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

Team Koen

Blob

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.

Visit Team
Team

Team Koen

Blob

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.

Visit Team

Thank You

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Donations Summary

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Charity

Muscular Dystrophy Western Australia