Sophia’s Chiari Journey

Sophia has Chiari Malformation 1.5 and has been through 3 unsuccessful brain decompression surgeries all within the last year. Her last surgery she spent 6 months inpatient due to complications and is now preparing for the next surgery. She has had surgery at two world renowned hospitals and has only gotten worse after surgery. The last decompression cost her the ability to swallow and talk. This has caused lung infections from aspirating her own secretions as well as her to be 100% g-tube dependent. After the last extended hospital stay we reached out to a Neurosurgeon in California who specializes in rare cases. He reviewed Sophia’s MRI images and we traveled to see him in June. He was the first person to give us hope in a long time. He believes he can not only help her not be in pain daily but get back her swallow and speech. Currently her brain stem is compressed and until that is resolved her health is only going to decline. She is in pain daily,  vomiting and dry heaving and unable to have a normal life. Her good periods far are far and few with the bad days outweighing the good. Between seeing all 3 Neurosurgeons who have been involved in her care the general consensus was she needs another surgery and sooner rather than later. The only surgeon who has felt they can absolutely help her with surgery is the one in California. We are hoping to move forward when we can but financially it is not easily obtainable. Between flying, out of pocket cost due to insurance not covering it, and the possibility of relocating to California it is more than we have. So please share, and even if you cannot donate we ask you keep Sophia in your prayers. Thank you!