SANTA ROSA, Calif. (KGO) -- Keely Aguilar spends her mornings and nights on her phone, her computer and all over social media, doing anything she can to find the specific baby formula she needs for her 11-year-old daughter, Nataliyah.
Her daughter has an extraordinarily rare disease called Bainbridge Roper Syndrome that affects all aspects of her cognitive and developmental abilities, including her digestive system. She cannot eat food or even process many of the common baby formulas found at grocery stores. That's why Aguilar turned to Facebook and Instagram, hoping others might be able to help her find the specific formulas she needs.
But in doing so, she said, she fell victim to a scam.
"I've had some amazing people, mostly colleagues and friends who have gone above and beyond to place personal orders on Amazon, and I have one friend sourcing it from Mexico right now for us," Aguilar, a single mom and small business owner, told ABC7 News from her home in Santa Rosa. "I've also had people reach out that are scammers."
Aguilar said after her story was shared online, she received several messages from people who wanted to help. Among them, a woman who offered to sell her baby formula for $250.
"I thought I was doing my due diligence in asking a lot of questions. I asked for pictures, I asked for expiration dates on the cans. She had all the right answers," Aguilar explained. "And so I sent money and then her profile on Facebook disappeared."
She has not received the formula.
Since then, Aguilar also believes she's been contacted by others attempting a similar scam.
"It's shocking that people would prey on this segment of our population," she said. "These are the most vulnerable people we have out there, and our families are already struggling everyday, so it's definitely disheartening."
The scam is just one more setback for Aguilar, who has already spent thousands of dollars out of her own pocket to purchase formula for Nataliyah that is usually covered by her insurance. She said even with the new emergency shipment of formula that's landing in the U.S. this week, she feels lost and in limbo.
"It's been an absolute nightmare," she said. "Until these formulas are back in stock at our supply company and we can receive regular shipments again, we are going to be going through this."
ABC7 News reached out to a representative at the White House and North Bay congressman Mike Thompson. Both told ABC7 News that they have shared Aguilar's story with the Department of Health and Human Services.
"Families across our country are feeling the burden of the baby formula shortage, and it is distressing to hear that parents like Santa Rosa resident Keely Aguilar are unable to find the formula that her daughter needs to survive," Rep. Thompson said in a statement. "I have inquired with the Department of Health and Human Services to find the formula that Keely's daughter needs and will continue to be in contact with the administration about the recent Operation Fly Formula shipment."
But Aguilar is losing patience.
The formulas Nataliyah needs are Neocane Jr or Puramino Jr. Neither are included in the emergency shipment.
According to the White House, one that is included in the shipment is Alfamino, which is considered a viable alternative. Aguilar said she is willing to give it a try.
Either way, she sees the emergency ship as a band-aid for a bigger problem. Her long-term solution? To reopen the closed Abbott baby formula plant.
"Right now we really need to get people to advocate for getting that plant to open up again," she said. "And finding out what our officials are going to do to make sure the formula gets into the hands of the people who really need it."
A GoFundMe page has been started to help support Aguilar's family.
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