Wednesday, February 11, 2015
Bonnie was a very special person. I used the term "was" because she passed away yesterday after years of suffering with Mitochondrial Disease, a very rare, but deadly disease that robs the body's cells of energy. I took the following paragraph from her CaringBridge page to explain to you how horrible this disease is. There is no cure.
Bonnie endured dozens of surgeries and had hospital admissions as long as seven and 11 months at a time (she celebrated multiple birthdays and holidays while an inpatient). She had a pacemaker and an implanted double vascular port and required daily IV medications and fluid, oxygen therapy, and lab draws several times a week. She delayed motility problems and gastroperesis, and she had her gall bladder, spleen, thymus, and colon removed (prior to which to she had a loop ileostomy). This disease affected every organ system in her body and caused adrenal failure, polycystic ovarian disease, and kidney and autonomic problems as well. Because of her severely impaired immunity, she required IVIG therapy every three weeks to help her fight infections, which often become life-threatening. Bonnie was unable to walk for years due to profound muscle weakness and was bed-bound, but used an electric wheelchair when she needed to be transported places. She also had chronic GI bleeding and required blood transfusions every three to five weeks. Her parents were her caregivers; her mother and father are saints.
Despite her disabilities, Bonnie loved reading beauty blogs, entering contests, and writing. I was blown away when I received long, handwritten letters from her, letters I would not have had the energy to write. She was beyond special.
Always optimistic, she wrote in December, "I have a fluid collection in my abdomen that needs to be drained. It has been drained before, and it filled up again, and that will likely keep happening unless it is removed surgically. Unfortunately the pathology sample got lost last time it was drained, so the doctor wanted to try again and hopefully not lose the sample this time. I would so appreciate your prayers, they mean a lot to me and definitely make a difference! :-) Even after all the surgeries and procedures I've had, I still get a bit nervous, and contrary to the popular saying, it doesn't get easier the more I do it, I actually think it gets a little harder since I KNOW how much it hurts to have my abdomen stabbed with a huge needle (I've already been *not* enjoying daily lovenox injections, since I have to be off my coumadin for several days before and after the procedure)."
Her courage was unparalleled. Unfortunately, she developed sepsis one last time and lost her battle with this cruel disease. She asked the doctors to let her rest a few days, optimistic that rest would help her fight the infections raging in her body. They sedated her, and she rested. Her mother posted the following announcement on Facebook less than 24 hours ago, and I have cried since I saw it.
Bonnie has fought the good fight, but her Mitochondrial Disease had taken so much from her body's ability to fend off the sepsis. She passed peacefully with her family all around her earlier this afternoon. We are heartbroken, but we know she is finally free from the constant pain and is dancing with the Lord in heaven. We will be arranging a service to celebrate her and her ministry to so many.
I send my deep and heartfelt sympathy to her family - and to the many friends she made at CaringBridge, among her medical teams, on the Internet, and locally in her home state. Bonnie was a very special person.
Photos courtesy of her friends on her Facebook page