Rachel and Tyler Knickerbocker's 5-month-old son Noah has suffered a congenital heart problem since he was still in the womb, forcing them to quit their jobs in Huntley, IL and relocate to Milwaukee, WI along with their 3-year-old son, where Noah could receive treatment at the Wisconsin Children's Hospital.
Despite having health insurance, the family had been paying out of pocket to stay at Ronald McDonald House across the street from the hospital, since their home was over an hour drive away. With the growing costs of rent and bills amounting, the Knickerbockers were grateful when a family member offered to set up a crowdsource page so the family could receive donations from around the world.
Tyler's godfather, Ken Wills, set up the GoFundMe page in Noah's name, which managed to receive over $6,500 to help offset the family's costs until the page suddenly disappeared.
"I went to check the dollar amount, and it told me that ... this page no longer exists," Rachel Knickerbocker told ABC News. "Then, you know, my stomach dropped. So what does that mean?"
"PLEASE help and join Noah on his journey to a heart transplant," Wills wrote on the GoFundMe page before the page was deleted.
Wills had been advantageous over the holiday season in his campaign for Noah's GoFundMe page, tweeting messages and photos with the hashtag, #HelpNoah, in support.
A short time later, Rachel logged onto Facebook to see that Wills had posted images of three checks for donations to organizations that helped Noah and his family. At first, Rachel wondered where he got the money to do such a nice thing.
"Then, it clicked," Rachel said, realizing that the money was from the GoFundMe site.
The Knickerbockers said they took turns pleading with Wills to let them decide how to allocate the money raised in their son's name.
"The day prior, he told my husband he would have it sent to him," Knickerbocker said. "It's just kind of upsetting. We have so much going on already. Do we really need that, too?"
After closing the account, Wills posted images of the checks to his Facebook page, for $2,500 to the Ronald McDonald House, $2,500 to the Children's Hospital of Wisconsin and $1,000 to Boston Children's Hospital.
However, Boston Children's Hospital said it received no donation at all from Wills in Noah's name as of Jan. 6.; the Ronald McDonald House Charities' global office said it received a $125 donation on Dec. 29 and hadn't received anything further as of Jan. 5.; and the Children's Hospital of Wisconsin said it received a smaller donation than the $2,500 check Wills posted, but policy prevented it from disclosing the exact amount without Wills' permission. He hasn't called them back to give that permission, they said.
Wills did not respond to requests by ABC News for comment.
Rachel said Wills sent her family a copy of a thank-you note addressed to him from the Ronald McDonald House for his donation, but after speaking with Ann Petrie, the CEO of Ronald McDonald House Charities Eastern Wisconsin, Rachel learned it was a fake.
Petrie told ABC News that her chapter did not receive a donation from Wills and the thank-you note wasn't on the official Ronald McDonald House Charities letterhead.
"It clearly looks like some language is probably taken from a Ronald McDonald House Charities letter and then manipulated into a letter to give to this family, making them think a significant donation was made," she said, without being able to confirm its legitimacy. "I feel bad for anyone who donated hard-earned money not making it to the charity or the family as a gift."
In a statement, GoFundMe said it was unable to place the account on hold because there had not been a complaint from the family, and that the full balance had already been withdrawn.
"At this point, we would strongly encourage the family to contact their local authorities to resolve this matter," said GoFundMe.
Rachel said her husband, Tyler, had filed a complaint with the Colorado Attorney General's office.
Noah has critical aortic valve stenosis, causing the left side of his heart to be underdeveloped and rendering it nearly useless, said Dr. Steven Zangwill, who directs the heart failure and heart transplant program at Children's Hospital of Wisconsin. As a result of his heart failure, Noah has other health issues, including breathing problems, Zangwill said.
In early December, Noah was intubated because his heart worsened.
The family has another GoFundMe page and hopes to restart their fundraising effort. Follow Noah's journey on his Facebook page here.
Though the Knickerbockers' funding issues are far from over, they got some good news today: doctors found a heart for Noah. He underwent heart transplant surgery early this morning, Rachel told ABC News, and his family is eager to see him in recovery.