Our OAAT EAST chapter stretches from the top of Maine to Virginia and as far west as Ohio! This chapter is building a geographic community of families with kids battling life-threatening illnesses and we welcome new youngsters with powerful stories and DREAMS every day. Check out our current and past campaigns below to support their DREAMS!
Abby is an 8-year-old girl from Richmond, VA, who was diagnosed with Niemann Pick Type C in March 2019.
Abby's journey to diagnosis was challenging due to the rarity of her disease. She was born healthy with no initial red flags but started showing symptoms of gallbladder and liver issues, leading to an initial misdiagnosis that persisted for several years. It was only after seeking a second opinion at CHOP and later consulting a metabolic specialist that Abby was finally diagnosed with Niemann Pick Type C (NPC). The diagnosis revealed that her entire family carried the genetic disorder.
To manage her condition, Abby entered a trial medication program at the National Children's Hospital, involving spinal infusions every two weeks. She also attends numerous appointments in various locations, including Chicago, Maryland, and D.C., and undergoes regular therapy. Abby requires assistance with walking and understanding her needs.
Abby's diagnostic journey underscores the importance of finding the right doctor at the right hospital to fully understand her symptoms and provide her with the correct diagnosis and challenging prognosis.
Her family holds onto the hope that the medication received through a spinal infusion every other week, 2 hours from her home, will keep her disease progressing slowly. NPC has no cure, so they take each day as it comes.
Her dad said, “She would just be happy with nearly anything. She always talks about going to Disney World. She dreams of being a YouTube star, too. She loves to talk about traveling to another country to see a castle.”
Our goal is to gather $5,000 to send Abby and her family on a magical journey to Disney World and Give Kids the World. This incredible experience will let them cherish moments of joy in a place where their current challenges can momentarily fade away, filling their hearts with warmth and hope!
Kyleigh is a 7-year-old girl from North Dinwiddie, VA, who was diagnosed with Rhabdomyosarcoma in June of 2022.
Kyleigh, a vibrant and adventurous individual, enjoyed various activities like going to the park, shopping, trampoline fun and being a cheerleader before her diagnosis. She had to stop cheerleading due to treatment. Her interests now include riding horses, trying hip-hop dance, and soccer.
The discovery of a lump on her left forearm, accompanied by unexplained fevers, led to the diagnosis of Rhabdomyosarcoma, a rare type of cancer. Finding suitable treatment and doctors familiar with this cancer was difficult, significantly impacting the family's lifestyle. This resulted in a change where a parent left their job to care for Kyleigh and their other children, switching to homeschooling.
Since the diagnosis of stage 3 Rhabdomyosarcoma in June 2022, Kyleigh began chemotherapy in July, lasting for nine months, along with 33 radiation sessions and surgery to remove the tumor from her arm. Currently, she's undergoing a 6-month maintenance chemotherapy phase, with upcoming scans in November.
That is why we are on a mission to raise $1,000 to provide Kyleigh with a joyful experience of a Disney-themed birthday party as she approaches her 9th birthday in December. This celebration aims to create precious moments for Kyleigh, offering a temporary escape from her challenges and filling her heart with warmth and hope!