Lisa's Barry's Treatment Fund
Donation protected
My mother is 57 years old. I feel like I've only just met her, and I do not want her to be taken from me again.
My name is Julia Chandler. The circumstances of my youth did not permit me to be raised by my mother, Lisa Barry. Though I was raised up in the loving arms of my dear father, I pined over the lost love of my mother from my fourth year until my thirteenth, when I finally met her again. Then, the turbulent emotions of adolescence kept me from developing a close relationship with her. It wasn't until I was nearly 17 that I began to accept her history and mine, to accept her as a human with all her shimmering flaws and deep strengths, to accept all that she has given me, even in her absence. It has only been 14 years since I began to know my mother (though I have loved her like the moon for 31).
In May, Lisa Barry was diagnosed with Lupus. "Well," I thought, "that's a thing people live with for years." That was six months ago. The disease has eaten up the muslces in her arms and legs. She has been in the hospital more times than I can count for everything from rhabdomyolysis to gastrointestinal problems. The disease has begun to seriously effect her internal organs. Last week, these Arizona doctors reported that she has the most aggresive case of systemic scleroderma and one of the most complex cases of lupus that they have ever seen.
Systemic scleroderma is an autoimmune disease that, in my mother's case, is causing the tissue of her organs to become hardened and fibrous. Her galbladder, lungs, gastrointestinal tract, and esophogus have all been effected. Most pressing is the hard tissue developing in her esophogus - the buildup of which will make it impossible for her to eat food or drink water.
She has been recommended and accepted for treatment at Johns Hopkins Hospital in Baltimore, Maryland. At Johns Hopkins, she will likely receive a bone marrow transplant to slow the spread of systemic scleroderma as well as treatment specific to the scleroderma closing her espohogus. Doctors will insert a mesh sleeve to keep her esophogus functioning. The latter treatment is not available in Arizona. Her insurance will pay for most of the treatment she receives, but she does not have the money to fly to Baltimore.
I am asking with a heavy and hopeful heart for the funds to buy plane tickets for my mother and her companion (which may be her loving husband, or may be me) to fly to Johns Hopkins and to pay for her companion's lodging for the length of treatment - which may be as long as 100 days.
Please help our family if you can. Even a small donation will help. We would also love to hear your ideas or any information or advice you might have on lupus or systemic scleroderma.
With love and gratitude,
Julia Darcelle
My name is Julia Chandler. The circumstances of my youth did not permit me to be raised by my mother, Lisa Barry. Though I was raised up in the loving arms of my dear father, I pined over the lost love of my mother from my fourth year until my thirteenth, when I finally met her again. Then, the turbulent emotions of adolescence kept me from developing a close relationship with her. It wasn't until I was nearly 17 that I began to accept her history and mine, to accept her as a human with all her shimmering flaws and deep strengths, to accept all that she has given me, even in her absence. It has only been 14 years since I began to know my mother (though I have loved her like the moon for 31).
In May, Lisa Barry was diagnosed with Lupus. "Well," I thought, "that's a thing people live with for years." That was six months ago. The disease has eaten up the muslces in her arms and legs. She has been in the hospital more times than I can count for everything from rhabdomyolysis to gastrointestinal problems. The disease has begun to seriously effect her internal organs. Last week, these Arizona doctors reported that she has the most aggresive case of systemic scleroderma and one of the most complex cases of lupus that they have ever seen.
Systemic scleroderma is an autoimmune disease that, in my mother's case, is causing the tissue of her organs to become hardened and fibrous. Her galbladder, lungs, gastrointestinal tract, and esophogus have all been effected. Most pressing is the hard tissue developing in her esophogus - the buildup of which will make it impossible for her to eat food or drink water.
She has been recommended and accepted for treatment at Johns Hopkins Hospital in Baltimore, Maryland. At Johns Hopkins, she will likely receive a bone marrow transplant to slow the spread of systemic scleroderma as well as treatment specific to the scleroderma closing her espohogus. Doctors will insert a mesh sleeve to keep her esophogus functioning. The latter treatment is not available in Arizona. Her insurance will pay for most of the treatment she receives, but she does not have the money to fly to Baltimore.
I am asking with a heavy and hopeful heart for the funds to buy plane tickets for my mother and her companion (which may be her loving husband, or may be me) to fly to Johns Hopkins and to pay for her companion's lodging for the length of treatment - which may be as long as 100 days.
Please help our family if you can. Even a small donation will help. We would also love to hear your ideas or any information or advice you might have on lupus or systemic scleroderma.
With love and gratitude,
Julia Darcelle
Organizer
Julia Chandler
Organizer
Salt Lake City, UT