Eli & Easton Reed

Hi my name is Kecia and my step sister Amanda and her husband gave birth to their beautiful baby boys on Easter Sunday ❤️

Routine state labs were done and came back very concerning for a disease called Spinal Muscular Atrophy (SMA). This rare genetic disease only occurs when both parents are carriers of the gene. This disease has 4 types. The only difference in the types is when symptoms begin. The first type happens in the womb, the second is within the first 6 months of life, the third is in adolescence, and the fourth is in adulthood. This rare disease causes the spine to atrophy and compress on the spinal cord. This causes the person to lose control of all their muscles (except for the heart), they are wheelchair bound, cannot feed even breathe for themselves.

The confirmation tests came back with both boys being positive. There is no cure, however, the genetic specialist spoke with Amanda and Austin and they stated that drug therapy has provided very positive results. It is a very new IV therapy and so far the children who have received it are clear up to 6 years old and living normal lives.

This news is fantastic to hear, but another roadblock was met as their medical insurance chose to cut out covering gene therapy as of 4/1/24. The SMA clinic is trying to fight it but as of now, Amanda and Austin don’t have a way to pay for the treatment they need. The gene therapy is a one time infusion that costs anywhere between 1 and 2.5 million dollars per child. Please pray that Mosaic’s insurance makes an exception and covers the treatment since the boys were born on 3/31/24.

While they wait for insurance to hopefully comply, they are still experiencing several medical bills (nicu expenses) and they are going to be starting an oral medication to prepare them for the therapy. Any prayers and donations will be greatly appreciated and will mean so much to their family.