CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) is a rare autoimmune disease that targets the peripheral nerves causing increase in sensory loss and weakness along with loss of reflexes.
Since her disease has progressed, Aleese has a difficult time holding her 2 and 3 year old sons, standing, walking with bilateral drop feet and lack of balance, changing diapers, zipping zippers on jackets, tying shoes, buckling car seats, cooking meals, etc. Every day she has a hard time getting around the house or doing minor tasks like getting ready for the day, or getting her boys ready for the day. Many days she is so weak, or in so much pain that she cannot even get out of bed. There are countless times that her husband, Danny, has had to carry her to bed or the restroom.
Aleese and her doctors have exhausted all "standard of care" treatments to slow the progression of CIDP with no success. The past two years have been spent getting series of tests after tests, poked and prodded an excessive amount, multiple surgeries, and countless hospital stays. IV infusions of Immunoglobulin for over a year and a half, plasmapheresis at the most frequent treatment schedule allowed, maximum doses of prednisone every 7-10 days for over two years, physical therapy, not to mention multiple pain medications to even get through the day. Not only are these various “standard” treatments not working but they have also brought on side effects negatively affecting quality of life. These include; excessive weight gain, lethargic to the point of not being able to sit up in bed, having to use a walker and sometimes wheelchair, severe headaches, lowered B12 and iron are just some of the many negative responses from these standards of care.
After almost two years of this suffering and decline, there was finally a glimpse of hope for Aleese's recovery when she found the clinical trial being put on by Dr. Burt at Northwestern University in Chicago,
Hematopoietic Stem Cell Transplantation (HSCT). The aim of HSCT is to “halt” the progression of CIDP. Current nerve damage may not be reversed, however, the idea is to keep the patient from getting any worse. The goal is to hopefully put the disease into permanent remission. Although this does not work for everyone, the data is very promising when it comes to stopping the disease progression. Putting the disease into permanent remission is the goal.
HSCT works by using the patient’s own stem cells taken from their bone marrow to be later transplanted back into their system with the plan to ‘reboot’ the immune system. Before reintroducing the stem cells, the patient undergoes chemotherapy to wipe out their current immune system.
Immediately after applying, Dr. Burt asked Aleese to visit for a 2 day evaluation of multiple tests and evaluations to see if she qualified to be a candidate. After one more trip to Chicago for follow up, she was approved by Dr. Burt and his team to undergo the stem cell transplant on a compassionate basis. Unfortunately, after three appeals with insurance, the treatment was denied coverage because it is not yet approved as a standard of treatment for her specific condition. Without insurance, the treatment costs $125,000. The treatment consists of two visits, the first of which is for 10 days requiring Aleese to be in the Chicago area, but not in the hospital, meaning a hotel cost and around the clock childcare is additional to this price. The second trip is a 2.5 week stay inpatient to get intensive chemotherapy, ending with the transplant of her previously retrieved stem cells.
At first, she felt defeated and forced to accept the continued decline of her health and quality of life because the amount of money needed felt unattainable. Although we all still realize this is an immense amount of money to come up with, we have committed as a family to find a way to get this done one way or another. Continuing to be trapped in this body and unable to be actively involved in her own life is just no longer an option for Aleese.
Any contribution, no matter how small, is greatly appreciated.
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