A Day with Magnus

Sweet baby Magnus was born with SMA (Spinal Muscular Atrophy) Type 1 (also called Werdnig-Hoffmann disease). This genetic disorder causes a breakdown of the motor neurons of the spine and brain, which leads to the muscles of the body not receiving messages to move. This lack of movement causes the muscles to atrophy. Individuals with SMA have difficulty performing the basic functions of life, like breathing and swallowing but SMA does not affect a person’s ability to think, learn, and build relationships with others.

Magnus was born with very little muscle tone and did not have the ability to make very many movements at all. After spending time in NICU, he was sent home to be cared for by his parents with an abundance of tools to help them cope with all the challenges. He has a Bi-PAP machine to aid with breathing (it takes muscles to breath), A gastric tube to help with feeding (SMA patients can have difficulty swallowing), suction machines for mucus, and a number of other things.

I was fortunate enough to spend an afternoon with Magnus after he had received treatments of Spinraza, which has resulted in Magus gaining strength in his muscles, increasing his movements! Fingers crossed this amazing little man continues to beat all the odds and continue to thrive.

If you are interested in helping Magnus' family-

https://www.gofundme.com/w5xn6-magnus

*Songs licenced via Music Bed.