Most of our friends & family know our mother, Gerry Noble, to be very young looking for her age. Ready to have a gathering with too much food that she made or just a simple glass of wine and a chat with a good friend. Always ready to travel or shop whenever invited or will go it alone if necessary. All of this is coming to an end for our mother as she has been diagnosed with CIDP.
Our mother went from the 50 year old woman who taught herself how to rollerblade to being unable to stand for more than 10 minutes. Just when it was time for her husband, Art, to retire, tragedy strikes and medical bills have left them not only unable to retire and move but, struggling financially at a time in their lives when it should be easier for them.
CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) is an incurable, debilitating disease that effects the nerve roots. You probably have never heard of it because only 1 in 100,000 people are diagnosed with it. It occurs when the body is being attacked by the immune system on the myelin sheath. This leads to the inflammation of the peripheral nerves. The myelin sheath is a protective covering found over the nerve fibers. This is destroyed and causes tingling in the extremities at first. This is followed by muscle breakdown, loss of reflexes, numbness, extreme pain, and eventually the patient is bound to a wheelchair and placed on a ventilator.
When diagnosed early, steroides are usually the first course of action followed by plasma replacement/blood transfusions. Gerry, unfortunately, was diagnosed late and has rapidly progressed beyond what these treatments offer. So, she will undergo extreme medical treatments called IVIG (Intravenous Immunoglobulin) therapies. The manufacturer of this drug treatment offers $2500.00 towards treatments annually if you qualify. Medicare and United Health Care do not "allow" such discounts. Leaving our parents to pay the full cost.
With the consideration that only 1 in 100,000 people are diagnosed with this disease, it is not considered a "competitive drug treatment" among the pharmaceutical companies Therefore, the treatments are extremely expensive. The first treatment will be approximately a $16,000.00 co-pay. Yes, that is, 16 THOUSAND DOLLARS! This is after they have accepted our mother's Medicare and United Health Care. It doesn't end there. Additional costs will be determined later for maintenance and ongoing treatments.
Gerry will undergo 4 hour IV treatments for 4 days beginning August 1, 2017. After that, she will receive 4 hour IV treatments for 1 day every 3 weeks up to 12 weeks. At the end of the 12 weeks, it will be determined if she will continue to get more treatments or, if she will only require treatment periodically for the rest of her life. Unfortunately, this will cost money they do not have.
Our stepfather, Art, was supposed to retire which would have been beneficial to our mother due to the help needed. However, he is now forced to continue working due to the medical costs.
With the difficult and lengthy treatments, there are no guarantees of improvement and will never be a full recovery. Just the hope for some relief.
Funds from this account will go to pay for surmounting medical bills that have incurred and will continue to incur. Any amount is greatly appreciated and will be utilized for our mother's medical bills and treatments.
This is a very urgent situation for all of us and we will continue to hope for the best but prepare for the worst. We will continue to try to find other ways to raise the money that is so desparately needed.
We, as a family, want to thank you for taking the time to read our story and for supporting our mother in this cause.
Our mother, Gerry, and stepdad, Art, thank you all unconditionally.
Sincerely, Jennifer (Morgan) Eppler, Susan (Morgan) Carrelli, and Steven Morgan.
- Giacomo Parisi
- Tom DiGuglielmo
- Fop 34
- Carol Dangelo
- Stephanie Prochilo 08-52
Organizer and beneficiary
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more