Journey's battle: Macon 2-year-old battles rare life-threatening disease

Two-year-old Macon child battles rare life-threatening disease (Claudia Coco / WGXA News)

MACON, Ga -- Everything went as planned when Jamie Rice had her daughter Journey. Even though she was only four pounds when she was born, Journey was healthy enough to take home from the hospital, but two weeks later was when the medical battles for Journey would begin.

"And when she was about two weeks old, she stopped breathing at home," Jamie Rice said.

They were able to perform CPR and get Journey to the hospital. Journey was sick with meningitis and went into heart failure. Jamie, Journey's mom, said when they did Journey's heart surgery is when they discovered that Journey has 1p36 deletion syndrome.

According to the National Institute of Health 1p36 deletion syndrome only affects one in 10,000 newborns. Now almost two years later, Rice's life has completely changed.

"I kind of work with her and try to get her to sit up and bear weight in her legs, but she also has multiple weekly doctor's appointments," Rice said.

1p36 deletion syndrome affects Journey's heart and causes intellectual disability. With two children rice is no longer able to work because Journey requires 24 hour care. Journey needs a feeding tube to get her nutrition.

"So we do her feeds every three to four hours, and she's on the pump for an hour at a time," Rice said.

Rice said she felt like she was hitting brick walls everywhere she turned, when looking for solutions for Journey. She wants other parents to know, you can always keep looking.

"There are more options out there," Rice said. "You know I felt like we were kind of stuck."

She found a Facebook group of parents of children with Journey's same disorder. Through the group Rice learned that through an assessment system she and her daughter Journey could qualify for a parent pediatric care assistant program in Colorado.

"They offer to pay you a salary and let you stay home and be your child's nurse," Rice said.

Journey's doctors tell Rice that Journey may only have a year left to live. Journey currently takes cannabis oil to help with her seizures, but Rice said Journey experiences 10 to 15 seizures a week.

But for Rice giving up on her baby is not an option. She said it will take sacrifice but she's leaning closer and closer to moving to Colorado.

"I've thought about it and prayed about it, and just we need to get her better right now," Rice said.

She said family and friends are a great support in this fight for Journey's health. Rice said her and her son Peyton's love for Journey is endless.

"She's such a great baby, and her brother loves her too, and we just couldn't imagine life without her... at all," Rice said.

Rice said staying positive is they key to helping Journey fight her battle.

If you want to help the Rice family you can click here.

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