Hello Everyone. Most of you know of my daughter Deniz Ipek Osborn’s long struggle with Cardiomyopathy and Heart Failure, as I have asked for your prayers many, many times and they have worked and continue to work by making treatments available for her, and I am so very grateful to all of you.
If you know Deniz, you know that she is a loving and devoted mother to her daughter Alyssa, who is the light of her life, a wonderful daughter, sister, aunt, cousin, friend, and dog mom. We all love her and need her. She is kind, loving, and funny and would do anything that she could for anyone, even through all of her struggles.
Her health issues began 23 years ago during her pregnancy when she was diagnosed with Peripartum Cardiomyopathy, which is a rare complication of pregnancy. Most women recover; Deniz did not and was left with Cardiomyopathy and Heart Failure that she has battled since then with constant ups and downs.
In the past year, her condition has been deteriorating steadily with her other organs being affected, so they decided to do genetic testing. The results were Arrhythmogenic Cardiomyopathy (ARVC), a rare inherited heart condition that weakens the heart’s structure and replaces heart muscle with fat and scar tissue. Her brother was tested and has it also. There is no cure, and it is progressive and can result in the need for a heart transplant.
Deniz spent a total of 6 weeks at Strong Memorial Hospital from this past February to April with them trying to stabilize her heart. She also developed an abdominal issue caused by inflammation that is most likely due to her heart condition. Most days, she is hardly able to get out of bed. To make matters worse, Deniz is not a good candidate for a regular heart transplant because she has too many antibodies, so that is why we’re here at Mayo Clinic in Rochester, Minnesota. They have the ability to try to desensitize her enough to be able to find her a match. Rochester, NY is not able to do any of this. Mayo also has expertise in her condition (ARVC) and is conducting studies.
In order for her to go through this process and hopefully receive a new heart, she and I have had to leave our home and loved ones behind to relocate to Minnesota while she is receiving the desensitization therapy (which is a form of chemotherapy), waiting for the new heart, and for at least 3 months after the transplant depending on her recovery, so we could be here at least a year. If the desensitization doesn’t work, the alternative would be an LVAD, which is a mechanical device surgically implanted into the left ventricle of the heart to pump blood to the rest of the body.
She is required to have a caregiver living here, which will be me. I will be renting an apartment with living expenses here and maintaining living expenses back home as my disabled son is living in our home and is unable to manage expenses on his own. I am also unable to continue my part-time employment. Deniz is currently in the hospital to begin these treatments, and I will be staying in a hotel until I can get an apartment set up.
Because of all this, I am humbly asking for help with travel, lodging, and living expenses here in Minnesota and any expenses that may not be covered by insurance. I never imagined I would be asking for this kind of help because I knew it would mean the unthinkable. It is hard for me to ask for help under any circumstances, but for my child, I will do it, and I’m sure most of you can relate.
I want to thank you from my heart and soul for any donation you are able to give and for all of your continuing prayers. You are all deeply appreciated. My love and gratitude always.
