27: Carys Anderson: Waiting Years for A Very Rare Diagnosis

This week Carys Anderson is my guest, talking about her nearly 6 year old daughter Seleh who has an extremely rare genetic condition called Tessadori Bicknell Van Haaften syndrome. We discuss the difficulty of finding holidays that can cater for both physical disabilities and complex sensory needs, the difficulties of waiting so long for a diagnosis and how isolating that was, the benefits of therapy as a parent and Carys has some brilliant advice about allowing time for yourself time as well as for your child. The charities Carys found helpful are:SWAN https://geneticalliance.org.uk/support-and-information/swan-uk-syndromes-without-a-name/Rare Disease UK https://geneticalliance.org.uk/campaigns-and-research/rare-disease-uk/ Tags: SEN parenting, SEND, additional needs