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FAQ asked about type 1 SMA patients

Below are some the most frequent questions and problems that we are seeing within the Type 1 community. We have compiled a guide based on the evidence from the newly Published Standards of Care, AA diet website and other documents or protocols that are used within the community.

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Nasogastric intubation

At some point in your child’s life / your life, there may come a time when swallowing may become difficult or weight gain may become slower.
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Powerchair choices – our experiences with the Tiny Trax

Deciding on which powerchair to get for your child, especially their first real one, can feel like a daunting task. A lot of SMA children who have the ability to control a powerchair from a young age start off with a Whizzybug which is a small motorised powerchair suitable for ages 2-5 (approximately), it gives them their first real taste of freedom and independence and the ability to join in and play with friends and family. It also prepares them for the next step in the powerchair world.

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Adapted Trikes

Please note this is not an affiliated Theraplay post, this is a review compiled by an owner of an adapted trike who has no association to the company and the views are their own. Adapted trikes are a great way…

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Innowalk – Parent Review

Please note this is not an official Innowalk post, this is a review compiled by an owner of an innowalk who has no affiliation to the company and the views are their own * As the website will state “The…

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