About Josie
Josie has a little known about illness, called Myalgic Encephalomyelitis (ME) - sometimes mislabeled Chronic Fatigue Syndrome (a totally different entity, but confused since the 80's with ME). Josie became ill suddenly, with an acute upper respiratory tract infection, at the age of 13. She went on to develop other symptoms which did not abate, and subsequently, she has spent the last nearly 8 years predominantly at home and bed bound. Her range of symptoms from back when she was only 13, to now, at the age of 21 are profound and extremely debilitating: muscular and skeletal pain, head pain, nausea, gut problems, flushing, temperature irregularities, tachycardia, shortness of breath, noise and light sensitivity, difficulty in standing for any length of time (beyond 5 minutes at the most), and other multi-system symptoms that leave her suffering for the greater part of each day.
Due to the confusion between ME and CFS, Josie has suffered additionally in regards to social stigma and isolation. Having lost her whole social structure and routine at the age of 13, she has also suffered severe depression in the following years.
There is no known cure for ME. Over the period that Josie has been ill, we have pursued many treatment modalities. Unfortunately, none have helped to date. We have recently been made aware of a treatment that could potentially significantly change the level of Josie's ability to participate more fully in her life. Currently, she is 85-90% bed bound, can only manage a very few activities, needs help walking, bathing, with medications, and with general day to day living. The treatment that is on offer is in Hawaii. We have spoken with Dr Jamie Deckhoff-Jones who is offering this, about what the treatment is and the results she has been having so far, which are promising. She is not offering a cure, just the possibility of being able to live a more active and fulfilling life.
In order to pursue this treatment, which would be a one-month intensive, and then followed up on our return home, we need to raise funds to be able to give Josie this chance.
Please donate as much as you can, and please pass this page on to family and friends and anyone at all who you think would be willing to help.
Our sincerest thanks go to everyone who can donate or pass on the info - it will make a huge difference to the quality of Josie's life.
Due to the confusion between ME and CFS, Josie has suffered additionally in regards to social stigma and isolation. Having lost her whole social structure and routine at the age of 13, she has also suffered severe depression in the following years.
There is no known cure for ME. Over the period that Josie has been ill, we have pursued many treatment modalities. Unfortunately, none have helped to date. We have recently been made aware of a treatment that could potentially significantly change the level of Josie's ability to participate more fully in her life. Currently, she is 85-90% bed bound, can only manage a very few activities, needs help walking, bathing, with medications, and with general day to day living. The treatment that is on offer is in Hawaii. We have spoken with Dr Jamie Deckhoff-Jones who is offering this, about what the treatment is and the results she has been having so far, which are promising. She is not offering a cure, just the possibility of being able to live a more active and fulfilling life.
In order to pursue this treatment, which would be a one-month intensive, and then followed up on our return home, we need to raise funds to be able to give Josie this chance.
Please donate as much as you can, and please pass this page on to family and friends and anyone at all who you think would be willing to help.
Our sincerest thanks go to everyone who can donate or pass on the info - it will make a huge difference to the quality of Josie's life.