Charlee’s TSC Journey & Brain surgery expenses
Donation protected
Charlee’s 1st Brain surgery is 11/7/23 and she will be in the hospital for approximately one month. During this time she is expected to have a 2nd Brain surgery. Her mom and dad will be with her during this time, and will be off of work, so please, if you can, help with her medical bills, travel expenses, families additional costs and all of her future doctor visits, that would be greatly appreciated. Thank you.
Charlee, my niece, and daughter of Andrew & Mikalea Schneider of Merrill, WI, has had over 300 seizures that were seen from 11/14/22-current. She is having 6-10 seizures a day and she is at the max dose of her medications, Vimpat and Vigabatrin. In February 2023 Charlee was diagnosed with Cortical Dysplasia on her left frontal lobe and Intractable Epilepsy, which means her seizures cannot be completely controlled by medication.
Charlee was diagnosed with Tuberous Sclerosis Complex (TSC) on 11/29/22 when she was just 3 months old. This is a rare genetic disease that causes benign tumors and cysts to grow on vital organs like the brain, heart, eyes, kidneys, lungs, and skin. Charlee already has an innumerable amount of tumors on her brain. She also has a level 2 cyst on her left kidney, a tumor behind her left eye and many areas on her skin that have been affected.
There is no cure, she will never outgrow it, she will always be on medication and will have continuous visits to specialists throughout her life. Many children with TSC are afflicted by intractable epilepsy, intellectual disability, and/or autism. TSC is the leading genetic cause of both epilepsy and autism.
BUT there is hope with your help! Charlee will be having 2 brain surgeries in November, and her surgeons are hopeful that this will greatly help her long term.
Getting into Cincinnati Children’s Hospital has been Charlee’s greatest chance to start the best course of treatment to fight this horrible disease and hopefully get her seizures under better control. They are a major center for research into tuberous sclerosis, they incorporate the latest scientific findings and are the first clinic in the nation to offer clinical trials of new treatments for TSC, and are able to offer highly promising and successful treatments.
Charlee has a life long struggle ahead of her. Cost should never have to be a factor when it comes to a child, their future, and the best medical experts for their disease. Please consider helping her parents get her the best care possible and afford them the ability to take off work to travel to Cincinnati and also pay for her future medical bills and travel expenses. Even if you’re unable to financially donate at this time, please share and continue sharing and be one of #babycharleesangels.
Thank you all so much.
Information about Tuberous Sclerosis Complex:
Organizer and beneficiary
Kaitlin Bonnell
Organizer
Merrill, WI
Mikalea Schneider
Beneficiary