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Love Joaquim: campaign seeks to raise $ 3 million for baby treatment

Love Joaquim: campaign seeks to raise $ 3 million for baby treatment

With only two months of life, Joaquim was diagnosed with Type 1 Spinal Muscular Atrophy, a rare, degenerative condition that damages all the muscles of his body and with a life expectancy of up to two years. Today, at seven months, the baby can only move his eyes and have difficulty breathing and swallowing. The cases are so rare that they affect one child every 200,000 births.

To this day, the baby has already had cardiac arrest, hospitalizations and many complications in his health and needs to be monitored all the time by a pediatrician, a physiotherapist and a speech therapist. Muscle atrophies cause muscular weakness and progressive degeneration of the movements, due to the impairment of the cells that cause it. connect the spinal cord to the rest of the body.

There are four main types. The most serious one that affects the baby Joaquim is Type 1, also known as Werdnig-Hoffmann's disease. It can manifest from the intrauterine phase up 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 diagnosis of spinal muscular atrophy should be made through genetic testing in patients with unexplained muscle loss and flaccid weakness, particularly in infants and children.

The disease does not has 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.

Treatment Aid

In December 2016, a new medication that could help in Joaquim'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 drug, Spinraza, during the first months of life, 40% to 60% of improvements in the condition of the patients were observed.

The problem is that treatment with this medication, which would last a year, has an estimated value of R $ 3 million. As the agreement does not want to bear the costs, the family of Ribeirão Preto (State of São Paulo) entered the court. However, you have to race against time to get the value right away, since the sooner you are medicated, the better your chances of recovery. Thus, the parents decided to create an online campaign seeking the help of donors through the page Ame Joaquim, on Facebook.

To contribute, you can donate directly in the accounts below or through the collective funding site Vakinha:

www.vakinha

Joaquim Okano Merck Manual

Mayo Clinic

Merck Manual

Merck Manual

Merck Manual

Merck Manual

Merck Manual

Subscriber Account 32852-9

AAME - Friends of Spinal Muscular Atrophy


H1N1 flu: Rio de Janeiro anticipates vaccination campaign

H1N1 flu: Rio de Janeiro anticipates vaccination campaign

The Municipal Health Department (SMS) of Rio de Janeiro decided to anticipate this Monday (25) the vaccination campaign against the flu. The objective is to immunize the priority population: children aged six months to five years, pregnant women, chronic kidney patients and elderly people over 60 years, women who gave birth in the last 45 days and health professionals.

(Health)

A study done by

A study done by

HEALTH In addition to affecting the pancreas, alcohol accounts for 4% Mammography Cohort found a relationship between the consumption of alcoholic beverages and acute pancreatitis. According to the authors of the study, the risks may vary according to the type of drink, such as wine, beer and whiskey.

(Health)