I want you to know about Jerika Bolen.
Jerika has had an amazing summer. Picnics. Fireworks. A prom held in her honor.
Unfortunately this will be her last summer as Jerika, a 14-year old Wisconsin girl affected with spinal muscular atrophy (SMA), has decided to come off the ventilator that keeps her alive in August.
SMA is the number one genetic cause of death in infants. Yet most people have never heard of this condition. SMA is caused by the loss of motor neurons in the spinal cord and brainstem, which leads to muscle weakness. There are several types of SMA, four of which are caused by changes (mutations) in the SMN1 gene.
Jerika has Type 2 SMA. In this form, symptoms begin between six to twelve months of age. Those affected with Type 2 typically live into their teens or twenties though some patients have been reported to live into their thirties. For Jerika, the diagnosis came at eight months of age, which equated to over 13 years of living with a fatal diagnosis. Like most people affected with Type 2, she has never crawled, walked or rode a bike. What she has had is 38 surgeries and a history of pain.
The other forms of SMA are highly variable. As a general rule, an earlier age of onset is associated with a more severe form of the disease. In addition, the type of SMN1-linked SMA that an individual develops depends on the number of SMN2 copies that person has; the less copies of SMN2, the more severe the SMA symptoms. Unfortunately, there is no cure for SMN1-linked SMA. Treatment focuses around managing the symptoms to maximize the individual’s quality of life.
Jerika’s mom created a GoFundMe page for Jerika’s prom, with a goal of raising $25,000. To date, the site boasts a total of over $35,000. This is just one example of how this girl has been in the hearts and on the minds of so many who have learned of her existence.
Much is being done regarding research into and treatment for SMA, though none of this will help Jerika. But hopefully these steps will help others like her, so that they will never have to make a choice no one, especially a 14-year old girl, should have to make.