E47 - Parenting a child with Muscular Dystrophy - The Hidden World of Women

When we are planning to start a family we get a picture in our head around what it’s going to look like. It very rarely looks like the romanticised picture we create. Sometimes, the reality is as vastly different to that picture.

In this episode Bri shares how her family doesn’t look how she anticipated. Bri and her husband have two children. When they took him to the hospital with wheezing from a virus their suspicions were confirmed. Ari had a genetic condition. After a plethora of testing it was confirmed that he has a very rare form of Muscular Dystrophy and to their knowledge he is the only living person with that form of MD.

Not to be left out, their eldest son was later diagnosed with type one diabetes. They hit the genetic lottery.

Bri shares how the diagnosis impacts their family, struggles with NDIS, juggling therapy and hospital appointments, as well as the absolute joy that their two boys bring to their lives.

It is really easy to get jaded, tired, cranky when life hands you lemon after lemon but Bri is light and relaxed (at the end of a long day at work!). When I asked what her secret is she said she gave up wine and she gives gratitude at the end of each day. Being grateful for the positives she has in her life every day helps refocus her perspective.

 

In the episode Bri spoke about some resources:

Muscular Dystrophy Support Australia https://www.facebook.com/groups/240404516426752

Muscular Dystrophy WA https://www.mdwa.org.au/

 

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