Join Mya's Fight for Health and Hope

Mya's health journey. Mya's, my 4-year-old daughter's health issues started in November of 2023. What started as torticollis and the stomach flu or torticollis and influenza turned into her having swelling, pressure, and fluid in her brain with bleeding and no known cause (which is still the case to this day). To say the least, her situation was not evaluated properly from the start, which has led to other symptoms and issues. I asked for more testing; I told them there was something else wrong, but no one listened to me because I'm just a mom being dramatic, I felt they thought. Since then, she has been admitted to Children's Hospital Wisconsin a couple of times, and we have been on outpatient for her in Children's Hospital, with repeated tests after tests. Visits every other week, every month, and every 6 months...

As of now, Mya's situation has changed. More symptoms and issues have been found, and she still has fluid and pressure in her brain, which has increased. She is supposed to be at 20; last year she was at 22, and this year she was at 34. So they took out the 14 in the fluid and put her on Diamox two times a day to help keep the fluid and pressure down. Her ANA is supposed to be at 40, and it's still at 1,280 (which they say is not a big concern). Her vitamin A is high, her IGF binding is high, her CSF is high, and she still has optic nerve swelling. She has a yeast overgrowth in her blood as well as liver congestion. Her red blood cells are clumped together. They still don't have a known cause, and they're still struggling and frustrated to find out what's going on with her. We went to the rheumatologist on Tuesday, and Thursday we went to the endocrinologist, and they referred her to the Mayo Clinic in Minnesota because her situation is very complex. Her vision is still a concern, but they know why that is because of all the swelling, pressure, and fluid in her brain that has caused nerve damage. She is considered legally blind right now.

We know that God is walking right alongside her and our family and that God will turn her situation into a miracle and a testimony. We are living off faith; well, I am living off of faith and coffee lol. I am reaching out not just for the financial part but to let my daughter's story be heard. To see if there is someone else who has been through this too or has any experience and for just continuous prayers for my baby. I'm not gonna give up, and I am going to fight every step of this journey for her. She is and will have a voice. Thank you all for reaching out and walking alongside us on her journey.