You caught me: I’m a Swiftie. I first saw Taylor Swift on her Speak Now tour and, in 2 weeks, am taking on the Eras tour in Philadelphia (PS: if you have any outfit ideas, let me know because your girl is struggling!). There is something truly magical about a concert. Everyone is unified in song; a sense of unity and belonging pervades the arena. And now, shares Parade, a 14-year-old girl named Nora Gooden is about to experience it for the first time ever.
Nora was born with a rare genetic disorder called spinal muscular atrophy (SMA). She uses a wheelchair for mobility support and also utilizes respiratory support as well. Because of this, as well as the continued looming threat of the COVID-19 pandemic, Nora hasn’t yet been able to experience a concert at all. Although EVRYSDI has reduced some SMA-related symptoms, her parents have still erred on the side of caution.
This year, her parents decided to fulfill her dream as a surprise birthday present. As any Swiftie knows, just finding tickets for the Eras tour can be an immense undertaking. But not only were Nora and her parents able to find seats, but Nissan Stadium is putting them right next to the action: moving the Gooden family to an accessible area with a great view of the stage. Since Nora lays sideways in her wheelchair, the Stadium wanted to ensure that the railings wouldn’t get in the way of Nora enjoying the show.
To Nora from a fellow Swiftie – “hold onto the memories, they will hold on to you.” Have an amazing time!
About Spinal Muscular Atrophy (SMA)
Spinal muscular atrophy is caused by a deletion or mutation in the SMN1 gene. This leads to the death of motor neurons in the brainstem and spinal cord. The loss of these neurons causes progressive muscle weakness and atrophy. There are multiple subtypes of SMA that vary based on severity and age of symptom manifestation:
- Werdnig-Hoffman disease: Also known as SMA type 1, this is the most common subtype, accounting for around 60% of cases. Symptoms typically manifest within six months following birth. These include developmental delays, respiratory muscle weakness, and inability to sit or support the head independently. Without treatment, this form may be fatal within 2 years.
- Dubowitz disease: Also known as SMA type 2, this form typically develops between 6-18 months old. Symptoms include difficulty swallowing, tremors, scoliosis, and difficulty standing or walking independently. Many people with this form reach adulthood.
- Kugelberg-Welander disease: Known as SMA type 3, this form develops between early childhood and late adolescence. Symptoms include progressive difficulty in climbing or walking, hip and leg weakness, and frequent tripping and falling. People with this form have a normal life expectancy.
- SMA type 4: In this late-onset form, which affects less than 1% of all people with SMA, symptoms often manifest at age 35 or older. Twitching, tremors, mild muscle weakness, and breathing issues may be present. People with this form often have a normal lifespan.