Maia’s Medical Expenses

This is for my daughter, my rainbow baby Maïa Victoria, she is 7 months old. She have been in the hospital for a month and three weeks since September 15, 2019, when she arrived it was a cold, after that due to a condition we did not know she had. For Maïa it was difficult to breathe and swallow secretions, which got worse with the cold. On September 18 they had to intubate it her and was extubated on the 25. On October 8 they detected a genetic condition called SMN1. SMA Type 1 SMA Type 1 is the most common form of SMA and affects about 6 out of every 10 children with SMA. Most children with SMA Type 1 have 2 copies of the SMN2 backup gene. In some cases, children may have more than 2 copies or fewer than 2 copies. SMA Type 1 is a life-threatening condition that needs immediate attention. SMA Type 1 can quickly lead to the need for breathing and eating support, and without treatment is likely to be fatal within the first 2 years of life. SMA Type 1 is very severe, but signs and symptoms may vary at first—which means caregivers may not see them right away. Knowing what signs and symptoms to look for is critical in getting a diagnosis and starting a treatment. What is spinal muscular atrophy (SMA)? SMA is a progressive, rare genetic disease that is caused by a survival motor neuron 1 (SMN1) gene that is missing or not working properly. Learn more about how SMA is inherited, the role of the backup gene, and the signs and symptoms of SMA. What causes SMA? The genetic root cause of SMA is an SMN1 gene that is missing or not working properly. When this main gene is missing or not working properly, the body cannot make enough survival motor neuron (SMN) protein, which is needed for motor neuron cell survival. Motor neuron cells are responsible for communicating with the muscles and telling them to work properly. A person is born with a certain amount of these cells. Without enough SMN protein, motor neuron cells become weaker and weaker and eventually stop working, lose all function, and die. As a result, things many of us take for granted, like breathing, eating, speaking, and lifting the head, become difficult. Once motor neuron cells die, they cannot be brought back. They have had it with an oxygen machine since we are here until the present. On October 16, they performed a tracheostomy and gastrostomy because she continue having problems swallowing and therefore eating. The possible cure for this condition is called Zolgensma, which Maïa's medical insurance denied. The cost of this is $ 2,100,000. ZOLGENSMA® (onasemnogene abeparvovec-xioi) is a gene therapy approved by the US Food and Drug Administration (FDA) for children less than 2 years old with spinal muscular atrophy (SMA). ZOLGENSMA is: * A one-time-only dose * Given intravenously (IV) * An infusion that takes 60 minutes ZOLGENSMA is designed to target the genetic root cause of SMA by replacing the function of the missing or nonworking survival motor neuron 1 (SMN1) gene. The new gene tells motor neuron cells to produce more survival motor neuron (SMN) protein. Motor neuron cells need SMN protein to survive and support muscle functions. I have never lost faith that God is not going to leave us alone in this, but I also need the help of all of you whatever is enough to achieve the goal and to save the life of my baby girl Maïa. Thank you so much in advance Maïa and mom. xoxo