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This cute baby is Heitor.

He struggles for life since his birth. As a premature baby he arrived into the world and had to stay 21 days in the the newborn intensive care unit. 


Shortly after he was discharged from hospital, his parents received bad news: Heitor had been diagnosed with SMA – Spinal muscular atrophy, therefore he had to go back to the hospital ICU, where he stays since then. 


Heitor has the infantile form of SMA disease which signs and symptoms often begin within the first six months of life. Affected infants have severe muscle weakness and poor muscle tone which leads to significant developmental delay. Most are unable to support their heads or sit unassisted. Other signs of SMA type 1 include: Breathing problems, difficulty swallowing, poor growth, etc. Many children with this type of SMA don’t survive past early childhood. 

 

However, a new targeted therapy may save his life: the SMA gene therapy. SMA gene therapy replaces the defective or missing SMN1 gene with a working copy. This new gene increases survival motor neuron (SMN) protein levels, which improves motor neuron function and increases the likelihood of survival. But time is the key: The treatment with the drugs (Spinraza and Zolgensma) has to be done for children less than 2 years of age with SMA.


The initial loading doses of Spinraza in the first year of treatment cost $750,000 and the price of the following doses falls to $375,000 each year. Zolgensma is the second treatment approved for SMA, following Biogen’s Spinraza, which costs about $2.1 million, making it inaccessible to most of patients. 


Unfortunately the brazilian public health care system just pay a part of the treatment. In order to make the whole treatment possible for Heitor, a fundraising campaign was initiated. His family would be very grateful for your donation. We are counting on your solidarity to save Heitor’s life.

DONATIONS

HEITOR MOREIRA MELO
Tax Registration Number: 171.757.114-09

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Donations through PayPal.
e-mail: hugovmb@hotmail.com

Name: Hugo Vinicius Moreira

Banco do Brasil

Bank: 001 – Banco do Brasil
Branch Code: 1620-9
Savings Account: 57.430-9
Tax Registration Number: 171.757.114-09

Name: Heitor Moreira Melo

 

Your help is very important!