“Ride 4 Ivy” Raised Funds for Son with Spina Bifida

At just 18 weeks old, Ivy Gaines, who was born prematurely, was diagnosed with spina bifida. His parents, Robert and Brittney, have worked tirelessly to ensure that Ivy is receiving the necessary treatment. However, as many patients within the rare and chronic illness sphere know, this often comes with high costs. According to WVVA, the community of Bluefield, WV rallied behind the Gaines family this past weekend for “Ride 4 Ivy,” an event to raise funds and support the Gaines’ medical and living expenses.

Altogether, the “Ride 4 Ivy” event had live music, a raffle, and lunch. You can find part of a recorded live from the ride here. After registering, people rode their cars and motorcycles to help raise awareness and support. Everyone set off around 11:30am. 100% of the event’s proceeds went directly to the Gaines family.

If you would also like to support Robert, Brittany, and Ivy, you may donate via Venmo at: @FourIvyGaines

Spina Bifida

Spina Bifida roughly translates into “cleft spine.” An estimated 1 in 2,500 babies are born with spina bifida, which occurs when the neural tube fails to close during the first month of embryonic development. This neural tube later develops into the brain and spinal cord. However, when the neural tube fails to close, the spinal vertebrae also do not close completely, leaving an opening through which the spinal cord is exposed. This leads to nerve damage. While the spinal opening can often be fixed after birth, many of those affected have life-long nerve damage.

There are various forms of spina bifida, such as myelomeninocele (the most severe form), meningoceleclosed neural tube defects, and spina bifida occulta (the most common form). Symptoms vary based on the form and severity. However, symptoms may include:

  • Hydrocephalus
  • Difficulty walking or maintaining bladder control
  • Dimple or tuft of hair over affected area
  • Fluid-fillled sac protruding from spinal canal
  • Lower limb paralysis
  • Intellectual disability
  • Seizures

Learn more about spina bifida.

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.

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