RICE TOWNSHIP, Pa. -- The family of a little girl suffering from a condition that has baffled doctors is turning to the community for help. They've started a GoFundMe page to raise money for a wheelchair-accessible van and ramp.
Carisa Drum's mother tells us her condition is so rare that science hasn't been able to match it with a diagnosis, so she's had trouble qualifying for financial help. She's now turning to the community.
Carisa Drum, age 3, loves feeling the vibrations of bells. Her mother says this is one of the good days. Some days are not this easy.
"She has epilepsy, she has hearing loss, she has vision issues, she is hydrocephalus and has a shunt that drains the pressure off her brain. She has a lot of GI issues, so she is fed and vented through bags 20 to 24 hours a day. She is not mobile. She is verbal in her own way, but she does not talk," said Carolynn Drum.
Carolynn says what makes it worse is that doctors are still trying to pinpoint Carisa's diagnosis.
"She was linked genetically through her father on a gene called PEX1 that deals with peroxisomal disorders, but because they have not found a link to me, she does not qualify for the research studies, science-wise, to get help."
This also makes getting financial help nearly impossible
Since Carisa is getting older, her family needs to make adjustments, including a van to replace her SUV that's big enough for a wheelchair and a ramp to get Carisa in and out of the house.
"But we want to show her life, and we need a car to get her out so that these four walls aren't all that she sees."
Carloynn says it's not easy to ask for help.
"But when you look at what she needs and what we lack. We have to look for help," Carolynn said. "We'll do our best to do what we have to do, and sometimes, if that means asking for help elsewhere, we'll do it."