Who Is Skyler Coghlan? 2-year-old Parents, who at the mercy of a devastating disease
Imagine the heart-wrenching journey of Skyler Coghlan, a two-year-old girl who suffers from the debilitating Dravet syndrome. This rare and severe form of epilepsy leaves Skyler at the mercy of multiple seizures every week, causing immense suffering for both her and her parents, Daniel and Bianca. As they tirelessly fight to provide Skyler with every possible chance at a fulfilling life, they face not only the physical and emotional challenges that Dravet syndrome presents but also the financial burden of obtaining her necessary medication. The inclusion of Skyler’s medication on the Pharmaceutical Benefits Scheme is crucial in providing support to families like the Coghlans.
Who Is Skyler Coghlan?
Dravet syndrome, a devastating illness, manifests in severe epileptic seizures and often results in intubation or hospitalization. Skyler’s case exemplifies the detrimental impact of this condition on her and her family’s life. As Dravet syndrome is caused by a mutation of the SCN1A gene, which affects brain cell function, it poses uniquely complex challenges for healthcare professionals. Despite the syndrome being discovered only thirty years ago, medical experts are pushing to explore advancements to mitigate its effects and alleviate the suffering it inflicts on patients like Skyler. However, current treatment options, such as costly medications, pose substantial financial obstacles for families.
One of the medications prescribed to Skyler costs a staggering $40,000 annually, placing an immense burden on her family. While Skyler’s prescription is covered by the Royal Children’s Hospital, many other sufferers of Dravet syndrome are not as fortunate due to the medication’s exclusion from the PBS. The absence of PBS coverage exacerbates the already overwhelming financial strain on countless families, further restricting their access to essential medications. By adding Skyler’s medication to the PBS, the government can alleviate the financial pressure facing these families and enable them to focus on providing the best care for their loved ones.
The struggle faced by Dravet syndrome sufferers and their families extends beyond the financial realm. As a result of the condition’s severity, individuals often find themselves unable to participate fully in daily activities, causing isolation and hindered quality of life. Inclusive healthcare support, such as the listing of essential medications on the PBS, would provide a much-needed lifeline to Dravet syndrome patients. The PBS inclusion would ensure that sufferers, like Skyler, can access the medications required to manage their condition while also providing a sense of hope and normalcy for them and their families. Stay well and stay connected to us.
