Spinal Muscular Atrophy known as SMA is a rare genetic disease that affects 1 in 6,000 children. And, tonight, the parents of 6 month old baby Emiliano Flores are calling out for help for their son. They are seeking assistance to access a life saving treatment for their infant, but the cost has caused quite a stir. They shared more details on their son's diagnosis, and how time is running out to get him the treatment he desperately needs to survive.
Emil Flores, Parent-Baby Emiliano
"So Emiliano was born in December 7th 2024 since then, after about a month we started noticing he was not very good in completing his motor skills. He was very weak in moving his little feet as he should have been. We then started looking into treatments, seeing specialists and running blood tests for Emiliano, we have sought medical expertise in Chetumal and also Merida. And also here in Belize, particularly, Orange Walk it was until recently that we got a diagnosis, having done a genetic test and he was diagnosed with Spinal Muscular Atrophy Type 1. Right now we are currently exploring options for his medication and that is where we are with my son."
Lisani Flores, Parent-Baby Emiliano
"Unfortunately being that it is genetic, it is embedded into your DNA it comes at a very high cost and we are talking about a treatment of 2 million US which equals to 4 million Belize dollars right so. Together with the country it was a shock when we found out, it's like is this real? How is it possible that our son got this gene disease when me and my husband consider ourselves overall healthy right? So that's what treatment looks like for him. And the treatment, since it is very expensive, it comes at again, just getting the treatment they have to approve Emiliano in order to get the treatment. And for him to get approved he has to have no complications right and unfortunately we are against time because his breathing is starting to get affected. He breathes faster than he should so his lungs are getting weaker, so it is important he gets his treatment. And this treatment as well isn't given to children above 2 so he does have a timeline, we are against time to get him the treatment he needs to live and secondly for him to be able to live a full healthy life."
Those wanting to assist the family can call 615-5735 or 6149302.
