Axel J-R Dennis was diagnosed with Spinal Muscular Atrophy at 5 weeks old. He was discharged after birth and sent home with no idea what was to come. At his 2 week pediatrician appointment he was sent to the local ER and ambulanced to Children's Hospital New Orleans to further investigate his hypotonia and failure to thrive. During his first 24 hours there, he was fed milk into his lungs through a NG tube that was placed by a nurse and she did not check the X-Ray before starting feeds. He was fed two hours and had to be bedside emergency intubated bc he was basically drowning. His CO2 spiked at 119 and this could have caused death. SMA being a rare disease, he was not given a fair chance to extubate without proper protocols. This inevitably resulted in being trached before the approved treatment could begin! Axel is on the first FDA approved treatment called Spinraza. A spinal tap, under anesthesia, 3 times a year. There is a new FDA approved treatment for ALL...may I repeat...ALL SMA kids under 2 years of age. It is a ONE-TIME treatment administered through an IV over an hours time span and done! That is it. No more anesthesia, no more spinal tap, no more bloodwork every 4 month for life!!! Axel's insurance company does not want to approve this new drug, Zolgensma, approved May 24th, 2019! They say that because he has a trach and uses a ventilator to help keep his lungs expanded when he sleeps, that he has Advanced SMA and that there is not enough clinical trial information to approve. The FDA approval is for ALL SMA types as long as you are under 2 years old. Axel is now almost 16months old. He has 8 months to get this approved, but the earlier the better because that is 2-3 more spinal taps that he would not have to get and also the sooner/younger the better with producing SMN protein!!! The expenses of a medically fragile child or human can be overwhelming in itself without the help of insurance to stress the situation to the max!!
Please share and help fight for Axel to receive this life saving drug before his time runs out! Every dollar counts!