Help save Baby Heitor’s Life! SMA disease
Heitor is a 4 month old baby, first kid of Laís and Alessandro, he was planned after 8 years of marriage and they’re were thriving to a lifetime of happiness and adventure with their baby. But the pediatrician noticed something different on him at one of the routine appointments, Heitor wouldn’t hold his head up or make movements a baby of his age should be doing, after tests and more tests the news came: he was diagnosed with the most severe form of a VERY RARE genetic disease called SMA (Spinal Muscular Atrophy). SMA1 affects 1 in 10 thousand born babies, and their life skills are compromised. Babies with this disorder will never be able to walk, stand up, run, eat or even breath without help. Most important (and very scary) is that SMA is FATAL, MOST KIDS DONT MAKE IT PAST THEIR SECOND BIRTHDAY! 
Baby Heitor is currently doing all treatments there are available: speech therapist, physiotherapy, cough and respiratory assist, and he also takes a medicine (the only one available in Brazil) every month trough lumbar puncture to prevent the disease from progressing too fast. His parents were able to get the medicine for free through the government, otherwise it’d cost $300thousand dollars. All the others costs for the treatment comes out of his parents’ pockets. In May, 2019 FDA approved a new and promising medicine called Zolgensma, available only in the USA it’s considered the most expensive medicine in the world and costs $3 MILLION DOLLARS. Zolgensma is the only HOPE his parents have, and the ONLY CHANCE Heitor has to have a better life. The medication needs to be taken before he turns 2 years of age. It’s proven Zolgensma acts in the defective gene, it’s not the cure but the results are very significant, kids that took Zolgensma can already stand up. Hopefully Heitor will have access to the medicine and his parents will be able to see him grow and have a better normal life! 
About the Organizer: I’m a first time mom, my baby Tyler is 17 months old and is very active and healthy, thank God! I’ve been friends with Heitor’s parents for about 7 years and was very happy with the news about the pregnancy, when Laís told me about her baby’s illness I felt like if it was my son. They live in Brazil, in the same hometown where I come from, and being away, the gofundme is the way I found to help them achieve their goal for the Zolgensma. It’s a scream for help, from mom to mom, dad to dad, friend to friend. Every penny counts! If you can’t donate, please, feel totally free to share, spread the word. We are stronger together!
thank you,
Kamila, Jeyson and Tyler!
