While staying at a B&B in Costa Rica, I fell in love with the homemade passionfruit jam served each morning at breakfast. The owner explained that all profits from the jam went directly to the young woman who makes it, in an effort to support her two-year old daughter Amy, who has an undiagnosed neurological disability. As a healthcare worker myself, I was shocked to imagine how the sale of a few jars of jam each month could have even a small impact on the often insurmountable cost of living with a disability. Moved by this realization, I asked to meet Amy and her mother, Emily.

 

Amy and her family live in Bijagua, a rural neighborhood in northern Costa Rica. Amy is a delightful, gentle child, and quite the celebrity in her neighborhood due to her infectious smile and awe-inspiring resiliency. Amy was born with a neurological condition that affects her ability to move and maintain balance and posture. She is currently unable to walk, coordinate movement, talk, or eat on her own, and experiences sensory-processing difficulties and frequent muscle spasms that often last up to 8 hours. Amy has yet to receive a formal diagnosis, but doctors have described her symptoms as cerebral palsy. This condition costs on average $921,000 in the US to manage medically – a figure which does not include out-of-pocket expenditures, emergency room visits, lost wages of family members caring for those with the disability, and psychosocial effects (CDC, 2003). Moreover, without a formal diagnosis Amy does not qualify for higher healthcare coverage, leaving her with little relative financial aid.

 

Amy’s condition has greatly affected her family. Emily, a young first-time mom and English-language graduate, stopped working in order to care for Amy full time. Emily stays with Amy 24 hours a day, typically confined indoors in their modest home, coordinating medical appointments and logistics, and making weekly batches of her jam from scratch. Without the means for a babysitter, let alone one who could manage the complexity of Amy’s daily needs, this has been an isolating experience for Emily, not uncommon to caregivers around the world. Emily’s husband, Marvin, works fulltime, typically starting at 8am and not getting off until 10pm. Every two weeks Emily and her family rent a car to drive to the capital of Costa Rica for Amy’s doctors’ appointments, which is a huge expense factoring in rental cost, gas, and food for the day. With the uncertainty of Amy’s condition, they have also had to finance countless medical tests, scans, specialist consultations, therapies and prescription medications, on top of routine visits to the doctor.

 

There is one practical thing we can do to help now. Without the ability to sit by herself, Amy is always either in Emily’s arms or lying down. This impacts both Emily and Amy’s independence, as well as Amy’s physiological development. Sitting independently is critical for the acquisition of postural control, bone density and strength, especially in the early years of childhood development. Assistive seating for children of Amy’s ability cost upwards of $3900 USD (Novak et al., 2012) and yet are vital to their ability to thrive.

 

I know that if 375 people donated the cost of a jar of jam ($8), Amy could get a chair. I can’t ship you jam, but I can promise you that your support will be going to a family who has maintained optimism, patience and resilience throughout countless forms of adversity - and that is just as sweet.