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Dare to Know...Dare to Care... Dare to Give...Dare to Share...DARE TO LIV!
Dare to Know: Ehlers Danlos Syndrome (EDS)
A genetic defect in the connective tissue encompassing almost the entire body from head to toe. Connective tissue is like glue, the bodies binding agent. Defective connective tissue causes systems in the body to malfunction. Liv has a dysfunctional Autonomic Nervous System making it difficult to regulate temperature, properly digest food, and think clearly (brain fog). Bringing about extreme fatigue while living in a state of Flight or Fight.
Liv's body is unable to regulate Cerebral Spinal Fluid (CSF). She has either CSF Leaks that trigger severe headaches while upright so the majority of her time is spent laying flat or she has too much CSF fluid known as Intracranial Hypertension causing extreme pressure on the brain. This causes severe headaches, a risk of blindness, cognitive impairment and mental instability.
Pain is constant coupled with dislocations of joints from weak tissue, misfiring nerves, headaches and other malfunctioning body systems. The goal will never to be pain free rather manage chronic pain enough to function. At 24 years, Liv has spent her last 10 years surviving life, instead of living it. She's Daring to Liv, breaking from her life of doctor’s appointments, painful procedures, surgeries, and hospital stays.
Dare to Care:
Daily life = pain, fatigue, depression, anxiety resulting from uncertainty and fear of living out the rest of her life with the ramifications of EDS. Liv craves something more to life than trying to survive each agonizing day.
She has spent endless time exploring healing in doctors offices, clinics, and hospitals, having limited time due to illness to enjoy the things she loves.
Connection to nature and the outdoors has increasingly proven to be a powerful contributor to a general sense of well-being improving her health, fitness, and self-confidence. Liv finds healing, solace, and connection in nature, excited for freedom to travel and explore. She wonders what may happen when combining the powerful world of Western medicine with Earth’s natural healing abilities.
Although she was hoping to be well enough to travel alone, her illness prevents her from doing so safely. Thankfully, friends and family have volunteered to accompany her on her quest to live a life worth living.
With your help, Liv and her committed team of medical professionals and caregivers continue to fight EDS giving her quality of life on the open road!
Dare to Give:
EDS requires extensive treatment, much of which is not covered by insurance and must be paid for out of pocket. At the age of 21 Liv aged out of Ronald McDonald House which provided lodging, food and support to her and her family for a $10 per night donation
In 2020 alone, EDS out-of-pocket expenses to Liv’s family exceeded $47,000 (medical treatments, air travel, rental cars, lodging).
Like many, Liv’s ideal dream was to finish college, get a good job and live independently. Medically her route requires a new road map to live a life worth living in her home away from home Van (aka Rhonda). Having a sense of independence and freedom to Dare to Liv is the ultimate ride.
Ways to Give- you can Dare to Give any denomination, funds raised earmarked:
$25K - Liv & Mickey (service dog) financial freedom to safely explore National Parks and other Natural Wonders. Liv has few functioning hours daily so her journey will take time.
$50K- Help subsidize cost of Van and accessibility features necessary to travel
Giving Back:
Liv will donate 10% back to the Stanford Children’s Pediatric Pain Program to help enhance program assisting more children living with lifelong painful illness to learn coping skills and have support to live a purposeful, productive and better quality of life
Dare to Share:
Please help Liv reach her goal by sharing DARE TO LIV campaign far and wide!
https://lompocrecord.com/santamaria/news/local/a-17-year-old-living-in-a-50-year-old-body/article_bfb892f6-788a-5534-8f0e-3a3eff621a5e.html
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‘Grey’s Anatomy’ episode based on Arroyo Grande teen’s rare illness...
https://www.sanluisobispo.com/news/local/article110044352.html
Dare to Know: Ehlers Danlos Syndrome (EDS)
A genetic defect in the connective tissue encompassing almost the entire body from head to toe. Connective tissue is like glue, the bodies binding agent. Defective connective tissue causes systems in the body to malfunction. Liv has a dysfunctional Autonomic Nervous System making it difficult to regulate temperature, properly digest food, and think clearly (brain fog). Bringing about extreme fatigue while living in a state of Flight or Fight.
Liv's body is unable to regulate Cerebral Spinal Fluid (CSF). She has either CSF Leaks that trigger severe headaches while upright so the majority of her time is spent laying flat or she has too much CSF fluid known as Intracranial Hypertension causing extreme pressure on the brain. This causes severe headaches, a risk of blindness, cognitive impairment and mental instability.
Pain is constant coupled with dislocations of joints from weak tissue, misfiring nerves, headaches and other malfunctioning body systems. The goal will never to be pain free rather manage chronic pain enough to function. At 24 years, Liv has spent her last 10 years surviving life, instead of living it. She's Daring to Liv, breaking from her life of doctor’s appointments, painful procedures, surgeries, and hospital stays.
Dare to Care:
Daily life = pain, fatigue, depression, anxiety resulting from uncertainty and fear of living out the rest of her life with the ramifications of EDS. Liv craves something more to life than trying to survive each agonizing day.
She has spent endless time exploring healing in doctors offices, clinics, and hospitals, having limited time due to illness to enjoy the things she loves.
Connection to nature and the outdoors has increasingly proven to be a powerful contributor to a general sense of well-being improving her health, fitness, and self-confidence. Liv finds healing, solace, and connection in nature, excited for freedom to travel and explore. She wonders what may happen when combining the powerful world of Western medicine with Earth’s natural healing abilities.
Although she was hoping to be well enough to travel alone, her illness prevents her from doing so safely. Thankfully, friends and family have volunteered to accompany her on her quest to live a life worth living.
With your help, Liv and her committed team of medical professionals and caregivers continue to fight EDS giving her quality of life on the open road!
Dare to Give:
EDS requires extensive treatment, much of which is not covered by insurance and must be paid for out of pocket. At the age of 21 Liv aged out of Ronald McDonald House which provided lodging, food and support to her and her family for a $10 per night donation
In 2020 alone, EDS out-of-pocket expenses to Liv’s family exceeded $47,000 (medical treatments, air travel, rental cars, lodging).
Like many, Liv’s ideal dream was to finish college, get a good job and live independently. Medically her route requires a new road map to live a life worth living in her home away from home Van (aka Rhonda). Having a sense of independence and freedom to Dare to Liv is the ultimate ride.
Ways to Give- you can Dare to Give any denomination, funds raised earmarked:
$25K - Liv & Mickey (service dog) financial freedom to safely explore National Parks and other Natural Wonders. Liv has few functioning hours daily so her journey will take time.
$50K- Help subsidize cost of Van and accessibility features necessary to travel
Giving Back:
Liv will donate 10% back to the Stanford Children’s Pediatric Pain Program to help enhance program assisting more children living with lifelong painful illness to learn coping skills and have support to live a purposeful, productive and better quality of life
Dare to Share:
Please help Liv reach her goal by sharing DARE TO LIV campaign far and wide!
https://lompocrecord.com/santamaria/news/local/a-17-year-old-living-in-a-50-year-old-body/article_bfb892f6-788a-5534-8f0e-3a3eff621a5e.html
-------------------
‘Grey’s Anatomy’ episode based on Arroyo Grande teen’s rare illness...
https://www.sanluisobispo.com/news/local/article110044352.html