Little / big warrior Mary Ann and her request for your help.
Fundraising campaign by
€100.00raised of €5,000.00 goal
Mary Ann's support for funding dolphin therapy, rehabilitation, therapies,, transportation, supplements, and others needs for her progress.
My name is Lubica and I desperately need your financial support for my daughter Mary Ann and her fight against an incurable disease. She was born on January 20, 2013 as a healthy baby and developed well to the age of 2.5 like any other child. When she was 2.5 years old, she had her first epileptic seizure and this was just the beginning of everything that awaited us. After a long carousel of various examinations, hospitalizations, we were unable to determine the cause of her seizures and set her up for the right treatment because we have found out that she is also drug resistant. Basically her body reacts to majority of meds with severe alergic reactions. From that point she was gradually diagnosed with more medical conditions such us - behavioral disorder, ADHD and Autism.
Saddly, due to all the above mentioned conditions Mary An has a mentall age of a 1 year old child and needs to wear diappers. After about 4 years, we have finally managed to set up Mary Ann with the right amount of dosage for her epileptic treatment. We no longer have seizures on a daily basis and in 2020, we found out the cause of her condition. Mary Ann suffers from a genetic mutation STXBP1 - epileptic encephalopathy. Unfortunately, with this type of mutation, she is the only one in the whole world! Therefore there are no clinical studies or publications available. There are a total of about 500 children in the world with the same genetic condition, but with a different variant/type. Currently, there is no cure the only thing that can be done is to alleviate the symptoms in various ways and try to make her as comfortable as possible. Mary Ann suffers from great aggression and self-harm. She stopped talking and does not know what she wants she needs or whether something hurts her, communication with her and understanding her is very difficult. If I don't understand her, she reacts by pounding, kicking, hitting me, pintching and throwing everything she can get her hands on. She doesn't recognize the danger or the fact that she can hurt someone. This year, her condition worsened so much that the nursing home for disabled children which she visited for 2.5 hours per day, terminated contract with us due to her unmanageability. This was the only place where she had at least some kind of contact with other people plus I had 2.5 hours for myself just to go to my gp, dentist, shopping..etc. On our recent hospital visit, our neurologist told us that since the little is not responding well to any treament what's available out there, there is only one way to help her - and that is an alternative medicine such as dolphin therapy, art therapy, music therapy, hypotherapy, kanis therapy and other various stimulants. Its only a way I can try to help her. Since Mary requires 24/7 care, I am at home with her on a care allowance and I do not have the opportunity to work. Her father left us when she fell ill and we have no idea where she is ever since. All these therapies, nutritional supplements, aids are very expensive, so please, dear donors, please help Mary Ann to improve her condition so also with your help she might be able to function amongs people again and we don't have to live in the isolation we are currently in. I truly believe this therapy will improve her condition, so kindly consider donating. Any amount will be very much appreciated.
- Lubica Zuzkovicova
- Campaign Owner Morher of Mary Ann
No updates for this campaign just yet
Donors & Comments
- Tim Pietrusky
- Donated on Dec 21, 2021
All the best for you and your family!
All the best for you and your family!