Raffle Benefits Teen with Syringomyelia

I don’t know about you, but I always get incredibly happy when I see stories about a community rallying to support one of its own members. For example, those in Paso Robles are all gathering behind teenager Brooklyn Pesenti. According to Paso Robles Daily News, Brooklyn recently underwent surgery in early September after she was diagnosed with Chiari Malformation 1 and syringomyelia. Now, the community is holding a raffle (tickets are just $10!) to help support Brooklyn and her family.

Brooklyn’s Story

As a high school junior, Brooklyn received her diagnosis of Chiari malformation 1 and syringomyelia. But what are these conditions? Well, Chiari malformations are rare conditions in which brain tissue extends into the spinal canal. There are three forms (1, 2, and 3); Brooklyn’s form, type 1, is considered the pediatric form of the condition. Chiari malformation 1 occurs when the skull and brain are growing. Because the section of the skull which contains the cerebellum is either too small or malformed, pressure occurs on the brain. 

Symptoms, which appear during late childhood or early adulthood, usually include neck pain, balance and coordination problems, headaches, dizziness, difficulty swallowing, tinnitus, and abnormal breathing. Syringomyelia, or a cyst on the spinal cord, can develop as a result of Chiari malformations. 

At first, Brooklyn’s symptoms presented as back pain, as well as arm and shoulder weakness. Her condition didn’t improve with physical therapy or chiropractic visits, so her family pursued MRI testing. At this point, she was diagnosed. Following her diagnosis, Brooklyn underwent surgery to remove the cyst and correct the Chiari malformation.

Raising Funds

Now, her community is holding a raffle to help raise money for any additional expenses that insurance does not cover. Raffle tickets cost $10 and are virtual. You may purchase tickets until October 10, 2021. The raffle drawing will be held on October 14, 2021. If you are interested in purchasing raffle tickets, you may:

  • Venmo @BP11-Comeback 
  • Contact Emily Smith at 805-423-5930

Please include your phone number when purchasing raffle tickets, as this is how the winners will be notified. The items being raffled off (for which I’ve included their donors) include:

  • Autographed jersey and flag (Gyasi Zardes, Columbus Crew Soccer Club)
  • 2 jars of honey and a t-shirt (Brysan Pesenti)
  • River Oaks Hot Spring & Spa gift certificate (Stephanie Roberts, River Oaks Hot Spring & Spa)
  • Traeger On The Go Barbeque (Gabe Hedges, Idler’s Home Paso Robles)
  • 30 oz. stainless steel tumbler and gift card (Cassie Mininni, Girl Looking Up)
  • Pig to butcher in 2022 (Bringing the Heat Livestock)

Syringomyelia

Let’s dig a little deeper into syringomyelia. In Brooklyn’s case, her syringomyelia – a fluid-filled cyst within the spinal cord – developed due to her Chiari malformation 1. Beyond that, syringomyelia may also result from a spinal cord injury or tumor, a tethered spinal cord, or meningitis. The fluid-filled cyst is made up of cerebrospinal fluid, which normally cushions and protects the brain and spinal cord.

This cyst may enlarge over time, causing a host of health issues. For example, this growth may damage the spinal cord and nerve fibers. As a result, patients may experience symptoms such as:

  • Muscle weakness and atrophy
  • Arm, back, and neck pain
  • Back, shoulder, arm, and leg stiffness
  • Scoliosis (abnormal spinal curvature) 
  • Muscle spasms, particularly in the legs
  • Loss of reflexes
  • Changes in bowel or bladder function
  • Loss of pain and temperature sensitivity
Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

Share this post

Share on facebook
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email