Axel's Fight Against SMA

This campaign is for Axel Dennis and his parents, Andrea James and Ryan Dennis. Axel has Spinal Muscular Atrophy, a disease that he needs treatment for now! There is no cure, yet, so Axel will have to fight his entire life to achieve things we often take for granted like breathing, swallowing, walking maybe even crawling and any other things that require muscles...to smile even. He was discharged after birth and sent home with no idea what was to come. At his 2nd pediatric follow up he was sent to the local ER and ambulanced 3.5 hours to Children's Hospital in New Orleans to further investigation his hypotonia and failure to thrive. During his first 24 hours there he was fed into his lungs through a NG tube, because his nurse nor the doctors checked the X-Ray before starting his feeds...he was only 19 days young. He had to be emergency intubated at bedside because he was drowning with respiratory failure and almost died. Axel was not given a fair chance to be extubated and breath on his own again because proper SMA protocols were not followed. This resulted in a tracheostomy being placed in his throat at just under two months of age and before treatment could take effect! Axel is currently on a FDA approved treatment called Spinraza that saved his life. It is a drug injected directly into his spine. This has to be done under anesthesia, 3 times a year for his entire LIFE. There is another FDA approved treatment for all SMA kids diagnosed under two years old....repeated for awareness...ALL SMA kids under 2 years of age. It is a ONE-TIME treatment administered through an IV. One time. That is it. A much less invasive, safer and less traumatic treatment. No more anesthesia, no more spinal taps, no more bloodwork with traumatic poking. Axel's insurance company does not want to approve this new drug called ZolgenSMA, which was approved in May 2019 with a price tag of $2.125 Million Dollars! The FDA approval is for ALL SMA types as long as you are under 2 years old, no other stipulations nor criteria. Axel is now 19 months old. He has less than 5 months to get this approval, but the earlier the better, every moment matters. Every motor neuron saved by this treatment allows Axel access to use those muscles now and in his future. Once the motor neuron dies, neither treatment can bring them back to life. So every day this is delayed is more loss to his quality of life! Axel has ongoing medical expenses and constant qualified support needs with his tracheostomy, ventilator, GTube and SMA challenges. This can be overwhelming within itself and the insurance company is making things so much harder and stressful. Axel is in a fight to get ZolgenSMA by any means necessary!! Please help by donating and sharing Axel's story! Time is running out! Any amount you can give will help him. Prayer is powerful!!! ***Here is a link where you can follow Axel's journey and his fight with SMA! Axel Brings Joy to Life! - Fighting SMA https://www.facebook.com/groups/324088988268563/