Story By: Alex Cope, Sub Editor: Joseph Golder, Agency: Central European News
Video Credit: CEN/@amejoaomiguelcl
This father has been arrested for spending over 100,000 GBP of donations to help treat his son’s rare degenerative disease on a luxury lifestyle and the tot has now died.
Father Mateus Henrique Leroy Alves, 37, was arrested in July on suspicion of using 600,000 BRL (114,060 GBP) of the money raised online to help treat his two-year-old son Joao Miguel’s type 1 spinal muscular atrophy, a serious degenerative disease and Joao has now died.
Alves raised the alarm after allegedly using the cash for a luxury trip after travelling from his home in the town of Conselheiro Lafaiete to the city of Salvador in the eastern Brazilian state of Bahia without his wife Karine Rodrigues.
His wife raised the alarm after her husband allegedly gave her information that did not add up, and the police told her to check the funds raised for their son.
Video Credit: CEN/@amejoaomiguelcl
Rodrigues allegedly found large amounts had been withdrawn and Alves was arrested after three days away. Reports state the suspect is believed to have spent some of the money on watches, designer clothing, drinks, drugs and expensive aftershave.
Local media report he had allegedly “invested” 50,000 BRL (9,495 GBP) in a brothel in Conselheiro Lafaiete, but it is unclear if this money is suspected of having come from the donation fund.
Investigator Daniel Gomes said the suspect has been charged with larceny and material neglect of his family.
Gomes added: “He remains in detention. There has already been a hearing… the sentence is scheduled to be released next month.”
The fund had reportedly raised 1,000,000 BRL (189,900) for Joao Miguel who needed a medication called Spinraza to stop the advancing of the disease, each dose of which costs 341,000 BRL.
The tot received the first dose of the medication in August after the government agreed to pay for the first three doses of the treatment in light of the case against the suspect.
However, the tot died after his condition rapidly worsened at home last week. He was rushed to hospital but died of a heart attack, according to investigator Gomes.
Spinal muscular atrophy is a group of neuromuscular disorders that result in the loss of motor neurons and progressive muscle wasting. It is unclear if the tot would have qualified for the new drug Zolgensma developed by Swiss drug giant Novartis which can stop the disease in its tracks.
The medication has been dubbed ‘the most-expensive’ in the world and can reportedly cost 2.1 million EUR (1.85 million GBP) per injection.
The case against the father is ongoing.
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