My name is Mary de Rosas and I am Jamison Hill’s godmother. My husband Paul Peterhans and I are asking for your help to raise money for Jamison, who is gravely ill with Myalgic Encephalomyelitis. This is his story.
Imagine being 21 years old, prepared to graduate from college, pursuing your passion, being pumped about life and all the possibilities ahead of you. Suddenly, in an instant, you are literally felled by an illness that doctors don’t understand or in some cases don’t even believe exists. An illness for which there is no real effective treatment. This illness makes it impossible to get out of bed or even have a conversation. You don’t look sick. You struggle to support yourself and find yourself more and more lonely and isolated as your friends move on with their lives because they can. But you can’t. You are in bed for a week because you went to your cousin’s wedding. Or it hurts so much to talk that you are reduced to barely whispering a single word a day or using improvised sign language and letter boards to communicate your basic needs. Your family struggles to care for you while quickly depleting all their financial and emotional resources. This is Myalgic Encephalomyelitis (ME), more commonly referred to as Chronic Fatigue Syndrome. This is Jamison’s life.
Jamison, who is 27 years old, full of wry humor, tenderness, and a passion for fitness and bodybuilding, fell ill with ME in November 2010. What began as a really bad case of mononucleosis in his senior year of college at Sonoma State developed into ME. After countless visits to doctors he found a specialist who diagnosed ME in June 2011. Since that time Jamison has valiantly attempted to maintain his health, independence, and good humor. He graduated and was able for a time to live independently in Santa Cruz, doing freelance writing to support himself. But his daily activities were severely curtailed by his illness-no movies with friends, no more weightlifting, no more beach walks, and limited time with people. Any single one of these activities depleted his energy enough to send him to bed for days. In November 2014 Jamison moved from Santa Cruz, California to live with his mom, Kathleen O’Halloran, in Tuolumne, California, in the Sierra Nevada foothills, because he was no longer able to care for himself without help. Christmas Day 2014 he attempted and failed to make it down the stairs in their home to celebrate with the family, but did find some humor in it at the top of the stairs with his mom. (See photo).
Since January 2015 Jamison’s condition has worsened dramatically-he has been completely bedridden and unable to care for himself in any way. All day he lies in a darkened bedroom, unable to tolerate light or sound, able to make only the smallest movements of his body, unable to speak, eating only pureed foods through a straw, and fighting despair and loneliness. He receives the most superb and loving care from his mom, Kathleen; his dad, Matt Hill; his sister, Claire Hill; loving part-time caregivers; and amazing family members and friends. But he needs more help.
We are raising money to pay for medical treatment that is not covered by insurance and to pay for caregiving costs. Conventional medicine offers no treatment, so Jamison is scheduled to receive care at the Open Medicine Institute (OMI) in Mountain View, California in October 2015. OMI is a specialty medical clinic dedicated to clinical care and research of ME, immune dysfunction, autism, and other unusual, poorly defined diseases. Open Medicine Institute does not accept insurance. We must raise the money for his treatment and to pay for caregivers. Jamison and his family have exhausted their financial resources caring for him. A link to more information about the Open Medicine Clinic is below.
ME is a devastating illness, with features that seem particularly cruel to the many young people it strikes. ME often surfaces at a time in a person’s life normally spent with friends, being social and open to life and all its adventures. ME is an illness of extreme isolation. Its sufferers experience acute sensory overload-a normal conversation can require the energy of a 5 mile run. They cannot tolerate even low levels of ordinary light and sound. Even laughing is exhausting. Looking at a computer or a smart phone with its bright, backlit screen is unthinkable. Speaking hurts the throat, and muscles all over the body ache. The home around the ill person must remain quiet so a group of friends coming to visit have to whisper. And most doctors offer no hope-leaving people like Jamison wondering if the world has completely forgotten them.
We know there are many deserving causes seeking to raise money through this wonderful site. If Jamison’s story touches your heart please give whatever you can to help pay his medical and caregiving bills and send the message to Jamison that he isn’t forgotten. Thank you! Thank you! Thank you!
Links to more information:
Trailer for a new documentary about ME, which features Jamison: http://www.forgottenplague.com/
Link to an article about another young man suffering from ME similarly to Jamison: http://www.whitneydafoe.com/news/index.html
Another helpful, informative link: http://scopeblog.stanford.edu/category/chronic-disease/.
A YouTube video on Whitney and others demonstrating graphically the impact of this disease (just under 12 minutes in length): https://www.youtube.com/watch?t=348&v=9_HwOUiImvw
Open Medicine Institute: http://www.openmedicineinstitute.org/the-clinic.html.
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