Please Save Our Mother’s Life

(Written by Lisa’s Children, Sydney and Casey Torrey)

Our mom was diagnosed in December 2016, with a rare autoimmune disorder called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). Our mom has nerve damage, muscle weakness in her legs and arms, and lives with a high level of pain every day. CIDP has weakened her diaphragm and it is progressively getting worse. She has reached the point where she must be on oxygen at night and now often during the day. The oxygen is a short-term treatment, because it can’t make up for a diaphragm that continues to weaken. She grows weaker every day and was told by her specialists if she does not receive IV Immunoglobulin (IVIG) very soon, she will die.

She describes her inability to breath well as feeling like she is slowly suffocating…she’s short of breath and breathes very shallow. She does not get enough oxygen so she gets daily headaches and is extremely tired. Her voice cracks from not enough air…she stutters on her words and has slurred speech from not enough oxygen. Her legs are so progressively weakening that she will need a wheelchair soon.

Years of very expensive treatment and insurance denials since 2002 for chronic Lyme disease, and having to travel out of state to see specialists, have drained our parent’s life savings and retirement. They sold their home to use the equity to pay off mounting medical bills. In 2015 and 2016, my mom was diagnosed with a connective tissue disorder, Ehlers Danlos Syndrome(EDS), mast cell activation disorder (MCAD) and dysautonomia. Our parents have spent $110,000 in the last 5 years for out of pocket medical expenses. We have an extremely high deductible and benefits do not cover all that my mom requires. Our parents are in debt again.

If this wasn’t bad enough, our dad and his senior team of management lost their jobs on Jan 12th. There is two weeks of severance to be paid. Our dad’s unemployment will not cover the living expenses, COBRA premiums plus co-pays, and there is very little in their savings. Our COBRA is expected to be over $2000 dollars a month. The IVIG is often denied for several months while insurance reviews for the approval, and it costs $10,000 per infusion for adults. She was told initially she will need the IVIG infusions weekly. Our mom does not have months to wait for our dad to find new employment with benefits and for COBRA insurance approval to pay for the IVIG. She needs this life saving treatment now.

My brother Casey and I need to raise $196,000 for our mom, for 6 months of expenses. It will pay for the following:

· IVIG treatment while waiting for insurance approval and copays

· Medical bill debts already incurred

· COBRA premiums

· Travel expenses to see her specialists

· To pay for household bills and rent until our dad finds employment, which should take 3-6 months

Our mom wakes up every day prepared to help others through her non-profit work, for people with vector-borne infections. She always puts the needs of our family and patients first. Her dedication and compassion for suffering patients with chronic infections, like Chronic Lyme disease (CLD), gives her the mental energy to work when physically she is weak. We love our mom so much! Please give what you can for our mom’s lifesaving treatment and medical bills.

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