Two-year-old Joāo Miguel Alves has been battling a neuromuscular disorder called Spinal Muscular Atrophy [AME] since birth. Over his lifetime, the Alves family has raised money in order to afford treatment, which costs hundreds of thousands of dollars.
At just 7 months old, Alves was diagnosed with AME. It was after the diagnosis, and learning that each dose of the drug he would need, Spinraza, would cost $90,500 that Alves’ mom, Karine Rodrigues, began fundraising on her son’s behalf, the Daily Mail reports.
Spinraza is the drug that would help prevent the advancement of the disorder. Rodriguez used her social media to raise the money for her son. Over the course of a year, the family was able to raise nearly $250,000, thanks in large part to a marathon held in Conselheiro Lafaiete, the family’s hometown in the southeastern state of Minas Gerais. However, other reports suggest they raised as much as $358,000.
The money was eventually deposited into four different bank accounts. According to Pleno.News, Rodrigues managed two accounts, while her husband, 37-year-old Mateus Henrique Leroy Alves, managed the other two.
However, it’s now being reported that the Brazilian toddler has passed away after his father stole nearly $150,000 out of his accounts and spent it, leaving his wife, Joāo Miguel, and the couple’s older son behind. Mateus was arrested on July 22, after his wife of 13 years told police that he stole the money, the Daily Mail reports.
Rodrigues started getting suspicious that her husband was stealing money from his child after she noticed large sums of money were being withdrawn and transferred. By July 8, she filed a report with the police.
Prior to his arrest, Mateus was found staying at the luxury hotel he had been hiding in for two months. It was at the hotel that he reportedly spent all of his son’s medical dollars on “designer clothes, watches, drugs, hookers, and booze.”
New.com.au reports that Mateus spent a total of $18,000 on brothels alone. He was charged with larceny and material neglect of his family.
Mateus reportedly told authorities during his arrest that he was “the victim of an extortion scheme.”
Investigator Daniel Gomes told reporters, “He remains in detention. There has already been a hearing … the sentence is scheduled to be released next month.”
Alves wasn’t given his first dose of Spinraza until August 2019, though it’s unclear why. According to the Daily Mail, the family was waiting for the government to agree to cover the cost of the three treatments he would need.
Sadly, the 2-year-old died unexpectedly two months after receiving his first treatment on October 17.
Gomes said the toddler was rushed to the hospital where it was determined that he passed away of a heart attack.
Mamas Uncut is THE online place for moms. We cover the latest about motherhood, parenting, and entertainment as well – all with a mom-focused twist. So if you're looking for parenting advice from real parents, we have plenty of it, all for moms from moms, and also experts. Because, at the end of the day, our mission is focused solely on empowering moms and moms-to-be with the knowledge and answers they’re looking for in one safe space.