Sarah needs an advocate

Sarah has been ill her entire life and we have finally gotten the answer, and she has been diagnosed with a rare genetic disease called Tricohepatoentric syndrome type 1, so rare that only 3 people in Canada have this disease and 110 world wide, this is a congenital disease that most kids die from by the age of 5 she is very lucky to still be alive. This genetic mutation causes constant diarrhea in all patients, malabsorption of nutrients and most everything in the gut, they have problems with their immune system and during the last year she has had a feeding tube placed and she gets all of her nutrition this way, unfortunately this type of feeding is not working on its own and it has been determined by her Enteral feeding specialist, her family dr and her dietician, all have been following her progress and making changes to try and get her feeds to an optimal level, but she has not done well on this alone so they have decided she needs  something called TPN, unfortunately St Paul’s hospital in Vancouver is the only hospital in BC that runs a home TPN training program, and they have put off getting started for 5 months now and with each day she gets more malnourished, finally they called and we thought she can hopefully get started on the road to feeling better, but once she was in the hospital they decided they think working on getting her feeding tube working better was the way to go, even though her dietician has changed her formula 4 times in a year, how fast it runs, how much water is put into the mixture and none of that worked, and instead of looking at her medical records and talking to a team in Toronto who have 2 patients with this disease they have decided to do it their way, they have brought her in for enteral feeding optimization instead of the much need TPN, they have run the feeds in a manner that causes her pain, nausea, vomiting and diarrhea, they assured us they would do this safely by doing blood work more, testing her blood sugar regularly and as needed, none of this has happened, her weight is 78lbs, her nutritional stores are empty but in order to acsess this life saving treatment she needs to hire a patient advocate  to help her navigate the system because after she gets TPN she will need to be seen by this team for the rest of her life and they use threats of being sent home, which in her case would mean going home to die starving to death, and bullying to get patients to do what they want and as her health slowly deteriorates she can not do this without someone to help her, she can not work and can not afford the cost, so I am reaching out to family friends and hopefully just generally nice people who want to help, our goal is not high but her need is, please help save her