Getting Gretchen Back Home
- On February 23, 2023 my special needs daughter, Gretchen, was taken away from me while she was in the hospital. When she was released she went to live in a group home. I’ve been litigating my guardianship for the past four years. The justice system rolls slowly. Gretchen has two genetic diseases, Tuberous Sclerosis, which is a neurological disease that can have tumors in the brain, heart, kidneys, and the eyes. This appeared when she was around a year old. She was in her thirties when her lung disease or LAM started. She has a mental disability.
For the last two and a half years Gretchen has been having vision problems. This is a known complication of her TS and it has many side effects that has affected her quality of life. Her mobility has been affected, she is fatigued most of the time, she has lost some cognition, she talks very little, she has seizures that she didn’t have before, lost fifty pounds because of low appetite and is not interested in any activities probably because of her vision. She has lost quality of life. Unbelievably, this condition has been ignored by her primary doctor and her guardian. Gretchen needs to see an ophthalmologist and I am waiting for an appointment to be made.
Since she has been living away from home she has suffered with many illnesses: covid, sepsis, lung infections and pneumonias. Some have been life threatening. During our guardianship litigation my lawyer filed two emergency petitions to take her to Mayo, both of them were denied. I was her guardian for forty-five years and have kept her safe and happy. She smiled all the time. Being without her has been the most difficult time of my life.
In 2020 Gretchen was in the hospital in Fargo with breathing difficulties after just having surgery at Mayo.
I initially told the hospital staff about her recent health history and assisted with Gretchen’s cares. On the second day I noticed Gretchen was drooling along with the other symptoms of illness, fatigue, loss of appetite and lethargy. After checking her labs, I believed she was getting overdosed with one of her medications and informed the doctor. He disagreed and said she was ok. On the third day he told me to leave the hospital because he said I was interfering with Gretchen’s medical care.
Then the county took away my guardianship because of my alleged interference with her medical care. They gave temporary guardianship to a professional guardianship provider. I had spoken to our Mayo neurologist and he ordered new labs for Gretchen and the result indicated that she was getting overdosed on two medications. The medications were lowered, but I didn’t get my guardianship back, instead I received a Maltreatment abuse charge from the county, which I fought and won. The county filed several more abuse charges all of which were proven false. I don’t understand why they oppose my guardianship. I was and am a good mother who puts her daughter before anything else. I thought social services was all about keeping families together.
I filed for my guardianship to be reinstated, but unfortunately two days before the hearing, my lawyer changed our strategy, which was to show how the provider was negligent with her care. He accepted a plea deal with the provider, in which he agreed not to mention any of the wrongdoings of the provider and in return, they wouldn’t oppose my guardianship. They didn’t hold up their end of the bargain, therefore we lost the case.
This spring I filed again for guardianship representing myself and included my sister as co-guardian. I ran out of funds after paying my lawyer $135,000 for his representation. My case was never heard because my filing was not properly before the court.
I appealed This decision and lost because of legal technicalities. I plan to hire a lawyer, the next and last time. After Gretchen has a diagnosis for her eye problem I will file neglect against the provider and possibly her doctor. My hopes are that I will get my guardianship reinstated after that.
In order to do this I will need financial help with the legal expenses, which at this time, I’m uncertain how much I will need. The past four and a half years have been financially very draining because I am without the additional income of being Gretchen‘s pca, which allowed us to buy our home.
Being without my daughter the past four years has been gut wrenching. We lost this time to be together that we can never get back and I’m not sure if we can get back her health. Gretchen has a mother and family that love her beyond measure and it’s only right that she should be with us. During this litigation I’ve faced many false allegations, but I have tried to remain strong and won’t stop until Gretchen is home. We didn’t receive justice because of the unfair actions of many people.
I would very much appreciate any financial support you can give us and please share this story with your friends and family. Gretchen and I need your help.
God Bless You and Thank you.
Joni Perna
Organizer
