Darnestown, MD

Trick or treating for a cure

Heather Jauquet

Local MoCo family fights for a cure for their’s son’s rare disease

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Flyer for vendor fair and fundraiser at Darnestown Presbyterian ChurchJaycee Garica, Used with Permission

CJ Garcia looks like your average elementary school student, that is until he lifts up his shirt. CJ suffers from a rare condition called Eagle-Barrett, or more commonly known as prune belly syndrome.

Prune Belly is condition that is characterized by a partial absence of some or most abdominal muscles giving rise to a wrinkled or prune-like appearance. Most parents who have children diagnosed with prune bell syndrome (PBS) are told to “let them go” according to Jonah Pedersen, a prune belly survivor.

The statistics for children born with PBS are staggering:

  • 20% of babies die stillborn
  • 30% die by their second birthday
  • 50% have varying degrees of abnormalities and surgeries.

While there are survivors, there is no cure. Most doctors will never encounter a patient with prune belly and it’s left to the families to educate the doctors on the condition.

Since CJ’s birth when he was whisked away for surgery only 30 minutes after he was born, his mother Jaycee has worked tirelessly to educate, fundraise, and connect with other prune belly survivors. At 8 years old, CJ has already endured 40 surgeries for his condition.

On October 15, 2022, Jaycee coordinated a medical fundraiser at the Kentlands Photography Cafe. Sean Mulligan and Jonah Pedersen shared their stories of what it was like to grow up with prune belly syndrome, their current struggles, and how they work to educate others about the condition. The condition is so rare that there is no federal funding for it which means that there are no resources for those living with the condition.

Fundraiser and vendor fair at Darnestown Presbyterian Church

On October 29 another fundraiser is scheduled at Darnestown Presbyterian Church. Any money raised will go towards the Prune Belly Network and CJ’s family to help offset medical expenses. Meet local survivor CJ Garcia and his family at the event.

We welcome everyone, families, kids to come and celebrate fall while enjoying trick or treating at over 26 vendors booths who will be donating a portion of profits to help fundraise for the Prune Belly Syndrome Network as well as our local young hero CJ. Wear your costume for photo opportunities and join in for the parade, enjoy lunch from the food trucks, and more!--CJ's Prune Belly Fundraiser

Activities

  • Music by Brian Wolf
  • Trick or treating at every vendor booth
  • Picture with a wizard
  • Costume parade
  • Food trucks
  • 27 local vendors
  • Silent auction
  • 50/50 raffle

Food and Treats

  • Jaycee’s Homecooked Sweets & Treats
  • Lady A Baking CO
  • Sprinkle Vegan Joy
  • Sugar Cheese Specialty Bakers
  • The Sweet Monster
  • I C Dreams
  • Cajun Seafood

Vendors

  • Auntie V’s Secret Stash
  • Bipity Bliss Skin care
  • Burner Candles
  • Candi’s Crafts
  • Cbeany Creations
  • It’s Just a Mamasauras
  • Jan’s Heart Work Embroidery
  • Kayni Paper
  • Muddy Creek Pottery
  • Purple Air Frog Arts
  • Rainbow Day Crochet
  • SarKatCha Creations
  • Semichaotic Life
  • Tap Into Polish
  • The Art Room
  • Mary Kay
  • Monat
  • Norwex
  • Scentsy

Support local businesses, the Prune Belly Network, and the Garcia Family at Darnestown Presbyterian Church, October 29th 11-2pm

Darnestown Presbyterian Church

15120 Turkey Foot Rd.

Gaithersburg, MD 20878

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Certified educator K-12 and Reading Specialist with a focus on the adolescent brain. I write about how educational decisions affect parents, students, and staff. As an educator and parent I also focus on community events for the whole family.

MD
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