Free Bethanie Mae
In https://www.change.org/p/southampton-general-hospital-free-bethanie-mae?recruiter=554660672&utm_source=share_for_starters&utm_medium=copyLink
Originally published by LDDA - The Liberal Democrat Disability Association
Bethanie is 13 years old and loves animals, swimming, art, ice skating and gymnastics. Bethanie has Ehlers Danlos Syndrome (EDS).
Ehlers Danlos Syndrome is a GENETIC and physical connective tissue disorder. However, Bethanie is being held against her will, and the wishes of her family, in Bursledon House paediatric psychiatric unit at Southampton General Hospital. She cannot eat or drink, so she is fed through a tube (Hickman Line) into her heart. She is told that she cannot leave until she is off her blood feed (TPN). But until her gastric problems are addressed by EDS specialists it is impossible for her to feed normally, so she needs TPN to survive. Her TPN can be provided at home, she doesn't need to be kept in hospital.
There is still a dispute over Bethanie's official diagnosis. She has been diagnosed with Ehlers Danlos Syndrome III. However, some medics believe that Bethanie has somatoform disorder. This is a psychological condition where the brain and body do not communicate together in the way they should. This is thought for various reasons. One reason given is that her symptoms are inconsistent. This, however, is the very nature of EDS - the collagen works inconsistently and so sometimes the body can achieve things one day that on the next day are not so easy.
But what these medics need to realise is that in the middle of this debate is a little girl. Just a little girl like their daughters, their cousins, their nieces, even themselves. A little girl who deserves better. A little girl who has been through a lot.
Give this little girl the treatment she needs. We do not deny that having a chronic condition does require some form of psychological support, but that is not the cause of Bethanie's condition.
Bethanie can go home on TPN whilst we wait to see EDS specialists as an outpatient to look at her bladder, joint and gastro problems. Hopefully this will result in coming off of TPN altogether and an overall better quality of life than being in hospital.
Let this little girl have access to her life. Recover her life by letting her live it!