New diagnosis? My top 10 tips for new special needs parents | #autism #cerebralpalsy

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For anyone new to the channel, Dusty-Mae has multiple complex medical and neurological and physical conditions caused by chromosomal abnormalities. Her primary diagnosis is Burnside-Butler Syndrome (15q11.2 microdeletion). Burnside-Butler causes developmental delays, severe intellectual and language impairment, motor delays, autism, ataxia, poor coordination, epilepsy, hypotonia, dysmorphic features and ADD/ADHD. In Dusty this has lead to her level 3 ASD diagnosis as well as genetic cerebral palsy and genetic generalised epilepsy. She also has Ehlers Danlos Syndrome, gastroparesis and MCAS combo which are all a seperate genetic condition unlinked to the above. I’m Dustys mum (Violet) and I also have this EDS, gastroparesis and MCAS. Both Dusty and I have feeding tubes. Our story is very rare and we’ve decided to share it with you, so come along on our journey.