Our daughter was diagnosed with Spinal Muscular Atrophy (SMA) at 4 days old. Spinal Muscular Atrophy is a rare genetic condition where you are born without the SMN1 gene. Without this gene, the muscles in your body die including the heart, lungs, and brain. There are four types of SMA, and our daughter was determined to be type 1. Most babies with type 1 used to not see the age of two. Thankfully, as of four years ago, there are life saving treatments that can help support their bodies.

Our daughter was unable to receive gene therapy when she was diagnosed because they found antibodies that would kill the gene. Our daughter's antibodies finally went to a safe level, and she is now able to receive the gene therapy Zolgensma (the most expensive single treatment in the world at a whopping 2 million dollars) that will replace the gene she was born without. This will possibly allow her to do things like walk, sit unsupported, eat independently, breathe on her own, and keep her muscles alive, as well as a longer life span.

This is such a blessing for our daughter that also comes with some hardship. After receiving this treatment, our daughter and family will need to be in isolation for a minimum of 3 months. Her immune system will be zero, and with the high-risk complications that can come from gene therapy, bringing home any germs can mean life-threatening complications for her. My husband is our sole income, and this requires him to take a leave from work for a minimum of three months. This will leave our household without income, but it will keep our daughter the safest possible. Our daughter will need to be monitored very closely after treatment with weekly appointments and gradually going to monthly for the next year.

Any funds donated will be going towards medical expenses, supplies, and necessities for our children such as formula, diapers, etc. We appreciate anything, even if its just sharing this page. Thank you for taking the time to read our story, and helping us support our daughters life saving medical journey.