Hello my name is Irish, Sophia’s mom. I made this gofundme account to raised awarenes for my daughter’s condition called Hydranencephaly. We are also the family from Isaiah Garza's tiktok video (He is an absolute blessing to us). Just to give you an idea what Hydranencephaly is, here you go. We are also the family from Isaiah Garza's video (He is an absolute blessing to us).
Hydranencephaly is a rare condition in which the cerebral hemispheres are absent and replaced by sacs filled with cerebrospinal fluid. The exact cause is unknown. This is extremely rare form of Hydrocephalus that involves the absence of portions of the brain. Unfortunately, there is no definitive treatment for hydranencephaly so the treatment focuses on managing symptoms. To help remove excess cerebrospinal fluid from the brain, a surgeon can place a shunt (VP shunting) or one-way valve, inside the skull.
Now that you have an idea what Hydranencephaly is, let me take you to my daughter’s journey. I hope you find the time to read it and get inspiration from it.
My daughter was diagnosed with Hydranencephaly when I was six months pregnant. It was a devastating news to our family since she is our first child. The doctor open the idea of abortion, but we opted not do it because we believe it is not our decision to make. When I was about to give birth, we were not prepared as most of parents do. What we are preparing for is the worst that we could ever imagine. The doctor told us that she may only live for a year, months or weeks or days worst only for an hour. But, my little warrior proved them all wrong. She is now 10yrs old and doing all the imposible. Sophia is a miracle for us, she underwent VP Shunting at the age of two weeks old to avoid her head swelling too much abnormally larger. When she was one year old, she was diagnosed with Cerebral Palsy spastic quadriplegia, which developed because of her brain congenital condition.
It is natural to want for the best for our children, and ofcourse, and I hope that Sophia will have better opportunities to thrive, develop and learn new things that fulfill her and bring her joy.
To be able to attain all these we are needing your help for our daughter’s medications. She will be needing physical and occupational therapies for her rehabilitation care. Medications for her seizure, possible operation for her hip and spine position. Wheelchair and splints for her feet and hands and all other medical treatment that she needs.
We are hoping that you will be able to help us for Sophia’s lifetime medication. This support will truly help her fulfill her needs and provide all the necessarry procedures that she needed to take in the future. And as what her dad said in the video: “She might be able to walk one day.”