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AME Daniel: parents create campaign to buy medicine of $ 3 million

AME Daniel: parents create campaign to buy medicine of $ 3 million

At the age of three months, Daniel was diagnosed with AME - Spinal Muscular Atrophy, a rare health condition that causes muscle weakness and progressive degeneration of muscles. The life expectancy for these patients is up to two years of age. Today, at age 1, he suffers from weakness in his legs and arms, difficulty in swallowing and breathing.

Little Daniel faces an arduous routine of daily home-based therapies.

In addition, the little one, who lives in Pernambuco with his family, faces an arduous routine of daily home-based therapies involving motor and respiratory physiotherapy, speech therapy, occupational therapy, follow-up with nurses, and weekly medical visits.

Understanding Spinal Muscular Atrophy

There are four main types of muscular atrophy. The most serious, which affects Daniel, is Type 1, also known as Werdnig-Hoffmann's disease. It may manifest from the intrauterine phase to six months of age. During pregnancy it is possible to observe little movement of the fetus. When the baby is born the most characteristic symptoms are marked muscle weakness, sucking and swallowing problems and breathing difficulties. The constant respiratory complications are the main causes of death by the disease.

The diagnosis of spinal muscular atrophy must be made through genetic tests in patients with loss of muscle strength and proximal hypotonia.

The disease has no definitive cure . However, the use of orthopedic appliances, special appliances, along with physical therapy can benefit patients by preventing complications such as scoliosis and providing a better quality of life and autonomy for children.

How It All Started

Daniel is the second son of the couple Taciana Spinelli Fernandes and Gabriel Fernandes, who also has Joaquim, 3 years old. Taciana's pregnancy and delivery were quiet. However, she noticed that over time he was losing the strength to suckle the milk during breastfeeding.

After a month and a half, the couple noticed that Daniel did not raise his neck when he was placed on his stomach. When the baby was three months old, he was taken to a very experienced pediatrician. "She put him in bed and began to watch how he reacted." It was when I realized that he did not lift his legs. "After the clinical examination, she said that Daniel's condition was probably a neuromuscular disease," says Taciana. Desperate for the diagnosis, the parents took their son to a neuropediatrician, who confirmed the suspicion of spinal muscular atrophy after investigating Daniel's case in depth, performing a battery of genetic tests.

Less than four months, the baby began to make physiotherapy, treatments at AACD - Association of Support to Disabled Children and at IMIP - Instituto Materno Infantil de Pernambuco. There he received the first orthotics, began to do occupational therapy and speech therapy.

Daniel did not gain weight between his four and six months of life, because of the difficulty of swallowing. To this day, he has had serious pneumonia, hospitalized in the ICU and even had to be fed by catheter. "The length of the hospitalization was very difficult, my husband and I took turns sleeping in the hospital and we could not neglect our eldest son, we counted on the help of our family and this experience united us even more", says the mother. > With a lawsuit, the family managed to guarantee Daniel's home treatment, but now they are awaiting an award to be able to take him for a walk: "We walk with him around the house, we take him in the yard to sunbathe, we play, we watch It is a baby handbag that is a little different from the conventional one. "

Campaign on the internet

In December 2016, a new medication that could help in the case of Daniel. In December 2016, a new medication that could help in Daniel's case was approved by the Food and Drug Administration (FDA), an American food and drug regulator. According to tests done on children using the medicine, called Spinraza, during their first months of life, 40% to 60% of improvements in the condition of the patients were observed.

The problem is that the treatment with this medication has estimated value of R $ 3 million. Due to bureaucratic issues, it is not possible to get the drug in court, so the family of Taciana intends to buy the drug. Because of the high cost, they decided to launch a campaign on social networks and started a virtual kit that will be available until June.

Beyond the challenge of getting the money, Daniel's family still has to dodge time. This is because spinal muscular atrophy is a progressive disease. "The money is very high, but we are doing it exclusively for the sake of our son. We are very sorry that all the children who need treatment have access to this medicine as long as possible.

To contribute, you can donate directly to the accounts below or through the collective financing website Vakinha

Donations: Banco do Brasil (001)

Daniel Spinelli Fernandes

Ag 8634-7 Savings 291-7

Variation 51

CPF: 136.816.324-64

Santander (033)

Daniel Spinelli Fernandes

Ag 4001 Savings 60057244-9

CPF : 136,816,324-64

Bradesco (237)

Daniel Spinelli Fernandes

Ag 3453-3 Savings 1006718-9

CPF 136.816.324-64


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