Prayers and Help for my Daughter Requested Please (update pg 5)

My daughter was born last October. The day after she was born, she stopped breathing right before we were released from the hospital. She was rushed to NICU where she spent 9 days going through every test they could think to give her. Turns out, after over 14 tests, she came back with one of the most rare disorders in the world, SMC1A.

SMC1A is a gene responsible for producing SMC1A protein that is critical for healthy and appropriate cell function. It is a type of Epilepsy.
Read more about the disorder here:
SMC1A

The short of the story is that my daughter has seizures. With a lot of these seizures, she will stop breathing. We average an ER visit once a month. The hardest part of being a dad is seeing your child suffer through something you cannot control or fix.

Along with the seizures, she is developmentally delayed. She will be 1 year old in 2 weeks, yet she is just learning to sit up; she just rolled over for the first time this week; she is undersized.

There are only about 120 cases diagnosed in the world. Only about 15 in the US. We are the only ones in Louisiana, and also the youngest in the world to be diagnosed. This is a super rare form of epilepsy that only occurs in females. Both mom and I tested negative as carriers.

My daughter is on 9 different medications for seizures, along with having to be on oxygen at night. If she gets a cold, it can escalate to pneumonia in minutes and cause her to have outbreak seizures. She also has a NG feeding tube so we can feed her. She is having surgery in 2 days for the permanent G feeding tube.

Currently, there are 2 doctors at UC Berkley that are trying to find a cure for the gene. The problem is the funding it takes to test the cure, then the cost of the cure.

This is where I need the help of TD. My little girl deserves a better quality of life. We need prayers. My wife has also set up a FB page for anyone to track my daughter's journey. We also are doing raffles and auctions to try and raise funding for gene therapy testing and treatment. I am not asking you to buy anything. I would ask, if you can, to follow her page and share the raffles and auctions.
Her FB page link:
Taryn's Tale

Thank you guys for your support