We just received our news from the Genetics team in Paris that Katie has got PHA Type 1 with 2 Mutations in her gene. still waiting on final reports from Paris, however she has also had a sweat test recently and she sweats excessive amounts of Sodium chloride through her skin and is on i very high level of salt compared to other PHA types that they know of. she is also now on blood pressure medication to lowere her BP of 125. Bloods have been good lately still have port-a-cath and nasal gastric tube for meds but hoping to go to gastostomy soon as i think this will be better for her development not having her arms tied down so much. is there a facbook page or group or is it just individual people to accept as friends?