The Lewis family has lived through it all. Their first born was diagnosed with spinal muscular atrophy (SMA) and did not live long, having passed away in 2013, reports Deseret News.
And when their second daughter Evie was also diagnosed with SMA, they received a miracle in the form of Spinraza, a new drug that is sweeping the SMA community.
SMA is a rare genetic disorder that is onset from a mutation from both parents. If both parents are carriers, their child has a 25% chance of being born with the disease. That is what happened to the Lewis family twice. SMA is a destructive disease, and known to be the number one genetic cause of fatality in babies. So when the Lewis family heard of this new treatment, they went after it and never looked back.
Their baby Evie took the injection right away, being only 12 days old. Doctors are now able to diagnosis the baby very quickly upon birth, or even right before. Knowing the likeliness that Evie would have it, they were ready to act quickly.
Utah’s Health Department has included SMA in the 41 rare diseases tested for newborns. They’ve implemented a Newborn Screening Program to find early diagnoses to then provide treatment before the disease can manifest. Knowing that SMA affects 1 in every 10,000 babies, it’s important to keep the disease on alert. Once they can treat the disease, the child’s life can be managed, yet once damage has occurred, it is most likely irreversible. This proactive approach should be implemented in other regions as well.
The drug has been a miracle for SMA patients. Each dose is priced at $125,000, which is steep, yet the effects are priceless. The Lewis family is beyond blessed to have been able to save their second baby Evie, and made it a point to honor and thank their first daughter Blakely for the time they had.