Maddies Fund for Healing

Hi everyone,

My name is Alli and I am helping my sister with some stuff that has been going on with my niece Maddie. Maddie is 9 years old and full of spunk, saying the last few years have been hard for her, would be an understatement. For the last few years, my sister and her wife have been working tirelessly to try and help Maddie with her mental health issues.

Back in 2018, Maddie was diagnosed with DMDD which is Disruptive mood dysregulation disorder, this is a condition in which children or adolescents experience ongoing irritability, anger, and frequent, intense temper outbursts. In recent months she has also been diagnosed with Bipolar 1, ADHD, anxiety, and complex trauma disorder. Unfortunately, this results in safety concerns at my sister's house, where she and her wife are normally the targets for Maddies rage moments. These rage moments have been getting progressively worse as she gets older, she is unable to understand why she is "like this" and why her brain isn't like everyone else. Maddie has also shown medication resistance to many of the medications that she has tried, while the only one that has worked in the past had a side effect that caused Corneal Edema which is the swelling of her corneas, due to this she was unable to open her eyes and eventually led to her losing her vision for a few days. While this was happening she also was seen in the hospital for lithium-induced neurotoxicity. This is a scary situation for our family, and we all wish we could just take all of her pain away.

There have been many issues over the last few years which include emergency room visits for days at a time, and many stays at an in-patient program. Due to the need for in-patient treatment, Maddie has had to miss everyday things, like school, birthday parties, and even holidays with her family. Since the Covid-19 pandemic, they no longer allow in-person visits and we have had to settle for zoom calls with her.

We have tried medications, and therapy, with little to no help with many of the options we have available. Since insurance coverage is a little difficult we are reaching out for help. Our next step is Brain Mapping, which will include analysis, report, and going over the report to devise a plan. This is unfortunately considered an out-of-network provider for insurance, which means that just the analysis and report is $950. Once a plan is in place the neurofeedback sessions are $175 per hour, and they would be looking for 2 sessions per week, with a minimum of 20 sessions to see any long-term results. There is an option to go with an intern at this practice which is significantly less but still includes the out-of-pocket costs which total to $3000

We know it's a long shot, and we as a family are putting ourselves out there just for her. We are trying to do every single thing for her, she came into our lives when everything was crashing down and she saved us, we just want to be able to protect her and keep her safe.

This little girl deserves to be able to live her life like a regular 9-year-old, instead, she just came home from an 18-day stay at an in-patient psychiatric facility, and again she is currently sitting in the emergency room, waiting to be placed in another in-patient psychiatric facility for children, where she will be until she is safe to come home.

If you are able to help in any way, you would be giving Maddie a chance to live a more regulated life with fewer bad days and more good days. If not we just please ask you to share this with your friends and family. Anything will help.

Thank you, from the bottom of our hearts.