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INDIANAPOLIS, Ind.– With a week to go in her pregnancy, April Jones was given devastating news by her doctor.

Jones’ daughter was diagnosed with hydraencephaly, a rare condition that was expected to take Kaliysha Barrett’s life at birth.

Jones was told her baby was to be born without a brain, but the infant was a medical miracle, sustained only by a brain stem, and lived for nine years.

“She had birthdays. Kaliysha was enrolled in school. She would have been a fifth grader,” said Jones. “I did a lot of touching, a lot of noise. They said that she was deaf and blind but I’m telling you when I walked in the room, the sparkle she had in her eyes, they lit up. She definitely knew I was coming in that room.”

When pneumonia finally took Kaliysha’s life last October, Jones set up a GoFundMe account to raise funeral expenses her insurance policy wouldn’t cover.

Grieving over the loss of her daughter, Jones suffered a second shock when she investigated the failure of her fund to raise any money.

“I Googled my daughter’s name and all this stuff about her popped up,” said Jones.

Not only did Jones find a 2013 news story about Kaliysha, but she also spotted a pair of GoFundMe accounts that the family had never approved.

“I have found that other people had posted Kaliysha’s picture when she was six years old they had made GoFundMe pages claiming to know me and posted pages and they were able to get money off of her picture that news had put up,” said Jones. “There were about two campaigns. A pastor raised about five thousand dollars and then one was a lady and she raised almost three thousand.”

The woman was from Indianapolis. The minister was from Ohio.

“The pastor, I don’t really know much about him other than he asked his church members to raise money, and they did, but he doesn’t know me. He’s never met me or my family before.”

Jones doesn’t know the Indianapolis woman either.

Jones reported the fraud to GoFundMe and, last month, the on-line fundraising site responded, confirming the name of the scammer Jones found during the search.

“Online, the campaign raised a total of $170, while offline, it raised $2,000,” an investigator wrote Jones. “After processing fees, the total amount available for withdrawl was $155.38.”

GoFundMe reported that the Indianapolis woman named in the investigation withdrew the money from the account on Nov. 21, 2013.

“We will be unable to release any further details without a court-ordered subpoena,” advised GoFundMe which recommended that Jones contact police.

Jones said she hasn’t done that since she’s still struggling emotionally with the loss of her daughter.

“It’s not about getting linked with me to give me the money because I didn’t know them. It’s just the fact that they used her like that,” said Jones. “She was a beautiful little girl- she learned how to talk she was the light of my life and I miss her terribly.”

CBS4 contacted the woman named in the GoFundMe investigation. She denied creating the fundraising account or receiving the funds or even knowing about Kaliysha, her condition or her death.

GoFundMe’s website indicates that to currently set up an account, an applicant must have a Facebook account or email address.