Scammed Trying to Get Formula for Daughter with Bainbridge Ropers Syndrome

If you’ve been paying attention to the news lately, you know there’s a shortage of baby formula in the United States. Many, many mothers and children have been affected, leaving them in the dark about where their next supply is coming from.

For some mothers, the situation is even scarier, as their children can only have certain types of formula. Keely Aguilar is one of these parents, as her daughter, Nataliyah, lives with Bainbridge-Ropers syndrome and can only have the brands Neocate Jr or Puramino Jr. Now, she spends the majority of her time scouring the internet to find what her daughter needs to survive.

Unfortunately, some people take advantage of those in need. Keely experienced this firsthand, as she was scammed by someone pretending to lend a helping hand in a dire time of need.

Keely and Nataliyah’s Struggle

In some cases, strangers on the internet have been extremely helpful in trying to find the Aguilars what they need. However, some people have done the opposite and tried to scam the family. The amount of people reaching out soared after their story was shared on Instagram, and with it, came one successful scammer.

One woman offered to sell formula to Keely for $250 – and she even provided all of the pictures and proof to go along with it. Once the money was sent, the woman disappeared along with her promises of formula. In the time since, others have attempted similar scams – which is incredibly sad.

Losing the $250 comes after Keely has already spent thousands of her own dollars to provide the formula that her daughter needs, even though it is typically covered by insurance. Now, they’re depending on an emergency shipment that just made it to the United States. The issue? The two formulas that Nataliyah can digest aren’t in this shipment. However, there is a brand – Alfamino – that is supposed to be an alternative, and Keely is willing to try anything.

She says that living in this uncertainty is the worst part, especially when nobody knows when it will end. She’s reached out to her representatives who have shared her story with the Department of Health and Human Services. However, she says the long-term solution is to reopen the Abbott baby formula plant.

Want to read more about the Aguilars and their journey? Find the source article from ABC13.

About Bainbridge-Ropers Syndrome

According to Orphanet, Bainbridge-Ropers syndrome is a rare disease that has only been described in about 100 cases in medical literature. A mutated ASXL3 gene causes the symptoms, which are variable but may include:

  • Global developmental delay
  • Language delay
  • Hypotonia
  • Intellectual disability
  • Feeding difficulties
  • Gastrointestinal symptoms
    • Common examples include constipation and gastroesophageal reflux
  • Skeletal abnormalities
  • Autism-like symptoms
  • Distinct facial features

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