My daughter, like many others, has been diagnosed with Spinal Muscular Atrophy (SMA), a rare and devastating condition that affects the motor neurons in the spinal cord, leading to muscle wasting and weakness. It is a condition that robs individuals of their ability to perform basic tasks, and it can be life-threatening without proper treatment. For our family, the medication available for SMA is not just a treatment—it is a lifeline.

Recently, I've come to learn that this crucial medication is under appraisal and there is a possibility that all treatments for SMA might be stopped. This is an unconscionable decision that could threaten the lives of many, SMA does not discriminate by age or background; it can affect babies, children, and adults alike. Each of these individuals deserves a chance at a full, active life, something this treatment allows them to pursue.

The treatment for SMA has shown significant results in improving the quality of life for patients and, in some cases, has helped extend life expectancy. Halting access to these critical medications would be a devastating blow to families who rely on this treatment. Without it, individuals with SMA face the rapid progression of the disease, leading to severe disability or even death.

I urge the government to take immediate action to ensure that the appraisal process takes into consideration the lives at stake and the proven benefits of SMA medication. Cutting off access due to budgetary concerns or other reasons when lives are at stake is not only unjust but also inhumane. Governments, healthcare bodies, and related agencies must put patient lives before financial constraints.

Please sign this petition to call for continuous access to SMA treatment, ensuring  children , as well as adults, have the chance to lead healthy, fulfilling lives. Let us come together to safeguard a brighter future for those battling this challenging condition. Your signature can help create the pressure needed for policymakers to act. Stand with us in the fight for life and dignity.