Taryn is a sweet 3 year old girl who was born with a genetic gene mutation called SMC1A that causes epilepsy and developmental delays amongst other issues. Taryn is currently taking 6 seizure medications, respiratory treatments along with being g-tube dependent. She requires help 24 hours a day that her parents are more than willing to do. Taryn does weekly physical therapy, occupational therapy, AAC device therapy, and feeding therapy along with monthly chiropractic visits. There is nothing that we will not do or try for her if it will help improve her life for the better. Her care team is top notch all being placed in her life for a reason. All of this will not help her or stop the condition from progressing. Taryn has never known what it is like to have a "normal" life-her very first seizure was when she was 20 hours old.

At the strongest point Taryn was able to scoot around on her back, stand with assistance and sit up for 20 minutes at a time. She currently needs assistance will all aspects of life due seizures and very strong medications. Taryn is extremely cognitive but her body itself is failing her, her brain does not always make the connection on what she wants her body to do. There are a lot of "bandaid" fixes that include medications, Keto diet, a VNS and even brain surgery, but none of those will ever fix the mutated gene.

Ultimately the only true treatment for her would be to fix the mutated protein gene that is causing the problem. There is a potential project for a mRNA LNP that could help her along with the other girls but that costs lots of money. There are less than 400 cases known of and her type is only found in girls, which makes it super rare. The two biggest problems are the group is very small and medical treatments are very expensive.

Our goal for Taryn and the other girls is to help ultimately raise $500,000 to be able to start the next project. It takes a lot of time to raise money then actually have the treatment start and go to trial. Being a stay-at-home caregiver for Taryn means asking for others to help our cause as we cannot finance this ourselves. I do sell things on the side to help with therapy costs, supplies and gas for appointments but will take years to ever help with the amount needed.

Thank you for reading Taryn's story and helping give Taryn the life that we take for granted. My girl is one of God's greatest blessings and she is meant for greater things in this life. Her story and treatment could help change other lives.

Thank you,

Devon Blanchard