Managing my Twin Sister's rare PSP Brain disease
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My Twin sister Joni cannot walk by herself and It gets tougher day by day as her symptoms progress. We have been trying to organize ourselves as Joni had moved in with our Mother Jean who provided some home care support for her allowing Mark her husband to go out and work. Unfortunately our Mom suffered a major stroke and is paralyzed, bed ridden and now unable to provide any help for Joni.
For 4 years we exhausted our resources desperately seeking answers as Joni visited many Doctors and Specialists and underwent countless medical tests. None could identify the cause while her condition continued to slowly deteriorate.
Finally in September 2018, she was diagnosed with an extremely rare fatal disease, PROGRESSIVE SUPRANUCLEAR PALSEY (PSP). Estimates vary but only about 3 to 6 in every 100,000 people worldwide (approximately 20,000 Americans) have PSP. It is a rare neurodegenerative disease that damages nerve cells in the brain, causing loss of balance and movement along with speech impediment, swallowing, vision, mood behavior and thinking. The disease progressively gets worse over time. Currently there is no known cure or treatment and leads to complications causing death.
As an amazing Jamaican Tennis Player and champion, Joni's soul's passion and love of life was expressed through her sportsmanship. Seeing her loose her athletic ability is heart breaking. Her dignity, integral leadership qualities and exemplary athletic career, was an inspiration for many in Jamaica and around the world.
In immediately supporting Joni's challenge for daily home care and therapy on her healing journey it would be greatly appreciated. She continues to manage her difficult condition with God's Grace and Blessings.
We continue to pray and seek for the advancements in science discovering a cure for PSP before it is too late for Joni and others affected with the disease.
Thank you for keeping Joni and our Mother Jean in your Prayers.
With Deepest Gratitude and Love,
Jody
For 4 years we exhausted our resources desperately seeking answers as Joni visited many Doctors and Specialists and underwent countless medical tests. None could identify the cause while her condition continued to slowly deteriorate.
Finally in September 2018, she was diagnosed with an extremely rare fatal disease, PROGRESSIVE SUPRANUCLEAR PALSEY (PSP). Estimates vary but only about 3 to 6 in every 100,000 people worldwide (approximately 20,000 Americans) have PSP. It is a rare neurodegenerative disease that damages nerve cells in the brain, causing loss of balance and movement along with speech impediment, swallowing, vision, mood behavior and thinking. The disease progressively gets worse over time. Currently there is no known cure or treatment and leads to complications causing death.
As an amazing Jamaican Tennis Player and champion, Joni's soul's passion and love of life was expressed through her sportsmanship. Seeing her loose her athletic ability is heart breaking. Her dignity, integral leadership qualities and exemplary athletic career, was an inspiration for many in Jamaica and around the world.
In immediately supporting Joni's challenge for daily home care and therapy on her healing journey it would be greatly appreciated. She continues to manage her difficult condition with God's Grace and Blessings.
We continue to pray and seek for the advancements in science discovering a cure for PSP before it is too late for Joni and others affected with the disease.
Thank you for keeping Joni and our Mother Jean in your Prayers.
With Deepest Gratitude and Love,
Jody
Organizer
Jody Rowe Staley
Organizer
Fort Lauderdale, FL