Little Natalie Essex was diagnosed with spinal muscular atrophy type 2 (SMA) when she was only a year and a half, reports CBC News. It all started when her mother, Meredith, noticed her little girl wasn’t bearing any weight on her legs, and continued to collapse. She also showed limited mobility when it came to raising her arms above her head. These strange characteristics of her little girl led her to an appointment with a doctor that later deemed Natalie had SMA type 2.
Spinal muscular atrophy affects the patients’ nervous system and limits their ability to move physically. It’s a rare genetic disease that slowly deteriorates ones muscles, leaving the patient without the ability to walk, eat, sit-up or even breathe without aided assistance. To learn more about this spinal muscular atrophy, click here.
Natalie’s symptoms continued to worsened and little hope was offered until they heard of the new treatment called Spinraza.
Spinraza is grazing over the SMA community being reported in multiple instances as a new treatment that has found success for SMA patients. Yet, it’s early on in it’s process to know whether or not there are long lasting effects of the treatment. In Canada, where the Essex family resides, the treatment is not available to everyone as the cost is extremely steep. The treatment goes for about $750,000 per patient in just the first year. Since the price is so high, Health Canada has granted certain patients with access to the treatment for lower costs or even free.
Those who are approved must have been diagnosed prior to 7-months of age, and they must show signs of high severity. So according to the stipulations that the CADTH, Canadian Agency For Drugs and Technologies in Health, implemented, Natalie does not apply to receive the treatment at a lower cost.
At this point, Natalie’s family can only hope that a change is made and the government looks to open up the access to Spinraza to a wider-scale of patients.
