Saving Janavi

Janavi before she got sick



 ❥ Please help us find 350 people able to give $100, so that we can reach our goal ❥

I am taking care of my sister Janavi who has been ill and in terrible pain for 6 years. She has been diagnosed with Complex Regional Pain Syndrome, Cachexia (wasting), and Abdominal Adhesions which we think are actually systemic.  During much of her illness she weighed under 100 pounds.  Now she is getting worse.  Because of the intensity of her pain, she shakes badly and can barely eat even when she is very hungry.  She weighs 93 pounds.  I am afraid that she is going to die.


Janavi has no pain relief because she gets dangerous reactions to most pain meds. She is still looking for a solution. She has never given up.  She wants so badly to just have a normal life and do things for herself.  Except for going to the Emergency Room, she hasn’t been outside for over a year.

My goal:

❥ We want to find ways to substantially reduce Janavi’s pain.  Janavi and I have worked hard to make her life bearable.  But her symptoms are racing ahead of us.  She is rapidly getting worse and we need to find more help as fast as possible.

❥ We want to start a CrowdMed  account for her. CrowdMed uses crowd sourcing to help diagnose and cure patients who can’t afford a team of specialists.  Since Janavi’s situation is becoming increasingly desperate I want to sign her up for their top-level plan.  This will cost $2,996 for four months.
❥ We believe she absolutely has to get some serious genetic testing.

She is struggling with her current expenses.


The major expenses, which we can’t afford anymore, are Janavi’s mounting home-care expenses and uncovered medical expenses.  Almost all of her medications are not covered by Medicaid. She has been declared disabled by the government but can’t get help with long term care from Medicaid, basically because she is not living on the street.  She can only walk short distances and can only stand up for 30 seconds at a stretch.   

♥︎ Please help. Please give as much as you can and help us find 350 to give $100. ♥︎


I love my beautiful little sister.  I want her to get her life back so badly.  Please help me save her.

Best Wishes,

Sue Held

Janavi weighing 91 pounds

❥Our God-mother wrote this about Janavi


A graduate of Goddard College, where she studied poetry, photography and media, Janavi Held was an up-and-coming writer and photographer when she was stricken at age 46 with an illness that now, six years later, is still debilitating her so that she cannot walk up or down stairs without help, she can only walk short distances around the house, and can only stand up for less than a minute at a time, and can’t sit in a car, or cook. She made the usual traditional medical rounds, tests, consultations and treatments, plus sessions with a myriad of healers and herbal remedies, but to no avail. Her condition has been labeled Complex Regional Pain Syndrome and Internal Adhesions, but nothing has been able to ease her constant pain or progressive weakness.

Last fall her condition worsened, the pain increased and her weight plummeted to 95 pounds. After an ambulance ride to the hospital, a forty-eight hour stay and a whole battery of tests, she left the hospital in worse pain; they could do nothing for her. 

Two and a half ago her sister Sue took Janavi her into her home in Colorado and set up a bedroom for her. Sue works full time but devotes much of her time to Janavi’s care. Because of Janavi’s worsening condition (she can barely walk at all, is in constant pain, and using her arms has become very painful as well), they have been forced to pay a home care agency to take care of Janavi and support Sue with other household tasks. In order to pay for home care and cover incidental expenses, as well as uncovered medical expenses, they need at least $15,000 a year. Sue’s salary cannot cover this additional cost. The only coverage Janavi has is Medicaid. 

Janavi is such a talented, spiritual soul. During these years of her illness, Janavi took refuge in her practice of Bhakti yoga which she had embarked on when she was nineteen. Her faith and persistence enabled her to write Letters to My Oldest Frienda book of poetry and photography.  This book of poems and photography that she produced in the years since her disease struck are so beautiful. In 2017, two of her poems were shortlisted for the prestigious Hamilton House International Poetry Prize and where included in a book entitled Eternity.

Now, she can barely type or read because of the persistent pain. These sisters, whose parents are gone, need help in order to survive.

Janavi refers to me as “her fairy godmother.”  I wish I had the power to disappear her pain.

~ Marcia Newfield


Janavi Held jpg


A message from Janavi

Janavi held
Photographic Collage by Janavi Held

~More of Janavi’s art and writing~

Link to her book on amazon:

♥︎Amazon author profile♥︎

 ❥ Please help us find 350 people able to give $100, so that we can reach our goal ❥


 ❥Thank you friends❥

Two Poems for Autumn by Janavi Held