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My name is Cassandra and my son Sawyer was born with a rare neuromuscular disease called Central Core Disease, resulting in him requiring a tracheostomy and a ventilator to support his breathing. Since we've started our journey I have always tried to help support other families through hospital life and receiving the news of requiring a trach and/or ventilator for their own child. It can be an extremely overwhelming process for a family to have to go through. The parents are always trained and supported from other medical professionals and other parents who have gone through it to help the transition to a new way of life a little easier, however, for the sibilings, other family memebers or even those that come across their lives there isn't the same training/support available. This is where my fundraiser comes into play. I have had the honour of meeting a fellow trach/vent Mom from the US who created and published a book that in my mind helps the process of a tracheostomy not seem as scary. This book explains everything about the trach and even how the lungs work. All well keeping it very easy for children to understand. This book can also be a huge help for those siblings to bring to school and share what theyve learnt to help promote inclusion and understanding.
What I am trying to do is purchase as many books as possible (my current goal is 50, but I'd be happy with 5) to have them available through our local Children's Hospital and have them given to any new families going through this new life changing event and those families that already live in the community with a trach. I have already donated 2 books to our hospital and I can't wait to be able to donate more with your help. More information on Mattie and his book can be found here:
https://www.facebook.com/MattieBreathes/
This book is also a wonderful way to remember Mattie, as he was such an amazing little boy that brought such light and laughter to everyone he met.
I appreciate any support you can provide and please share this.
Thank you, Cassandra
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