Welcome! This site was created to keep Bonnie's family and friends updated about the status of her condition. Bonnie has a Mitochondrial Disease, with confirmed Complexes I and III but is also being tested for others (she was diagnosed in Boston in January 2006). She had symptoms as a child and has been really struggling for more than ten years now with the advanced disease process (which has caused either failure or damage to many of her organs - it is a multi organ failure disease). As it is a new and under-researched disease, not many doctors or people are aware of it. What is "mito" you may be wondering? Here is one description:



"Mitochondrial Disease is, at heart, a disease of energy deficiency. The mitochondria, tiny organelles living inside our cells, are responsible for converting food and oxygen into energy. When the cells can't get enough energy, due to malfunctioning mitochondria, the cells begin to die, and the organs in which these cells live - the liver and kidneys and eyes and digestive system: the brain, the heart (everything in your body) - begin to fail. Mitochondrial disease is no single disease, in other words. It can affect any organ, appear as any disease, it is progressive, and it has no cure.

Not yet."



Bonnie has endured dozens of surgeries, and has had hospital admissions as long as seven and eleven months at a time (she has celebrated multiple birthdays and holidays while inpatient). She has a pacemaker and an implanted double vascular port, and requires daily IV medications and fluid, oxygen therapy and lab draws several times weekly. She has delayed motility problems and gastroperesis, and has had her gall bladder, spleen, thymus, and colon removed ( prior to which to she had a loop ileostomy). This disease has affected every organ system in her body and has caused adrenal failure, polycystic ovarian disease, and kidney and autonomic problems as well. Because of her severely impaired immunity she requires IVIG therapy every three weeks to help her fight infections, which often become life-threatening. Bonnie is unable to walk anymore due to profound muscle weakness and is bed bound but uses an electric wheelchair when she needs to be transported places. She also has chronic GI bleeding, and thus requires blood transfusions every three to five weeks. Bonnie and her family are so appreciative of all blood donors – as these gifts have added years to her life. We encourage as many people as possible to donate blood regularly, as many patients require blood transfusions and there is a constant shortage of all blood products.



Bonnie has a complicated and extremely severe form of this disease (the experts have said one of the most complicated cases they have ever seen), and while research is showing that in other diseases it is more and more common to find a mitochondrial component involved, it is still rare to have Bonnie's presentation of this disease. In cases such as hers, it is a terminal condition, although the timing of the worsening progression is unknown. She has firm faith that God will sustain her regardless of the disease until she has finished the work He has for her here, and conversely, that if she has that work finished tomorrow that no amount of intervention will be able prevent Him from taking her home. Bonnie continues her fight with multiple medical problems, but lives her life joyfully to its fullest all to God's glory, that His name would be known as a result of her life. Bonnie is cared for by a mito specialty team in Boston in addition to her hometown doctors in Phoenix. She is cared for at home by both of her parents, who provide round the clock care (the work of four full time nurses daily), and her Yorkie puppy named Mallie, who does what she can to make everyone smile. :-)




If you or anyone you know would like to help with the financial burden that her illness has placed on the family due to current and future medical bills in addition to other health-related expenses there is an account that you may donate into. It is at Bank of America, account #004379147441. Any gift is extremely appreciated, and Bonnie is especially grateful for everyone's prayers on her behalf. Thank you!



Please leave a note in the guestbook so that she knows you stopped by. :-) She really enjoys the messages left there and appreciates the encouragement they bring.

Journal

Friday, February 13, 2015 4:39 PM CST

Our hearts are heavy with sadness, but we needed to let you know that our sweet Bonnie passed from this life into the arms of her Lord and Savior on Tuesday. She had been fighting a fungemia at home for a few weeks, and wasn't getting better. Last Saturday she had too much trouble trying to keep her O2 sats up and asked to be taken to the ER. She felt that she needed to be intubated so that her body could rest up and fight the infection. She wrote an amazing letter while in the ER on Cpap, explaining her wishes for her care as well as reminders of how much she loved us. She asked to be told when the doctor was going to push the medication for the intubation, and when he did - she took off her mask and mouthed, "I love you."

She was on the ventilator, and her body continued to fail as the infection took over several body systems. She has fought long and hard for over a decade, and she has amazed us with her determination not to let this disease define who she was. She truly fully healed, and I am anxious for the day when I will again get to see her face-to-face.

Updates of the events as they unfolded can bee seen on Bonnie's Facebook page.

Her Celebration Service will be held tomorrow at 10 AM at the Redemption Church, 1820 W. West Elliot Rd., Gilbert, AZ 85233

In lieu of flowers, Bonnie wanted donations in her honor to go towards the

Mitoaction.org

and/or

umdf.org


Thank you for all your support, prayers, and words of encouragement. She cherished each and every one of them.

~Lyn (AKA Mummy)

Hospital Information:

Patient Room: *H*O*M*E* with nursing care

Phoenix Metro Area

~please email me for home address~

Links:

E-mail Author: bonniebelle@cox.net

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent. This information does not confirm that anyone is or was actually a patient at any facility.