03/01/2025
Today is
Calvin has SMA Type 1. Spinal Muscular Atrophy (SMA) is a genetic disease affecting the central nervous system, peripheral nervous system, and voluntary muscle movement (skeletal muscle). SMA involves the loss of nerves called motor neurons in the spinal cord which causes muscles to weaken with time. People living with SMA usually lose mobility, can have affected breathing & swallowing, have cardiac issues, and if the muscles of the back weaken, spinal curvatures can develop.
1 in 50 people are carriers of SMA and the disease affects 1 out of every 6000-10,000 newborns. It’s the leading genetic cause of infant death.
There are 4 types of SMA. Calvin has type 1 which is the most severe. Without treatment he wouldn’t make it to 2 years old. Calvin received Zolgensma when he was 27 days old. This was a one time infusion that prevents anymore loss of the motor neurons that activate your muscles. The sooner SMA patients get this treatment the better there outcomes are. This is not a cure, but it will hopefully give Calvin a stronger, healthier, and longer life expectancy.
Calvins family loves to promote SMA awareness and raise money for CureSMA. CureSMA has come up with 3 life saving treatments for SMA patients in the past 8 years. Our hope is that one day they can come up with a complete cure.
We love our Rare Warrior so much 🥹💪🏼♥️
