Destinee Santos

Destinee Santos was born on March 8th, 2007 at precisely 3:12 pm. She was exactly 8 pounds and had big, blue eyes. After coming home, she seemed to be just like any other baby; laughing, crying, sleeping, and enjoying as much tummy time as she could.

However, this era of normalcy ended abruptly on June 5th, 2008; when 11 of her family members piled into a small doctor’s office to hear life-changing news. Destinee was diagnosed with Type 2 Spinal Muscular Atrophy, a rare neuro- muscular disease characterized by muscle weakness that progresses over time.

This makes normal, everyday tasks harder than could ever be imagined by an able-bodied person. Sheena, Destinee’s mother, was a young, 22-year-old who did not know what this diagnosis meant for the trajectory of her daughter’s life.

The whole family was scared of what was to come after reading about the disease online; however, Sheena refused to even set foot down the rabbit hole of online medicine, and remained optimistic about what the future might hold. 

Sheena’s optimism worked out in her favor. Throughout her childhood, Destinee lived her days as a happy little girl who had the sassiest attitude. Although she had many doctors’ appointments that took up a lot of her time, she always had a positive outlook on the road to come. Destinee got her first wheelchair at the age of 3; without even understanding the concept of a motor vehicle, she was a natural driver. 

Destinee had her first surgery at the age of 8 on May 7th, 2015, which took a toll on her positive attitude. She had a bilateral-osteotomy, to help put her hipsback into place, which took 8 hours. Her second surgery, on September 14th, 2017, helped straighten her legs. Her most recent surgery was a spinal fusion on April29th 2021, which caused her to be in the hospital for 3 months for Halo traction and recovery. This took a huge toll on Destinee’s body and she grew weaker during those months. Recovery at home was the hardest, with constant pain meds to keep her comfortable, all while having a hairline fracture in her femur. Being the brave girl she is, she fought through and is thriving in high school today. 

Destinee is now a 17-year-old junior in high school who is striving to become as independent as she can be. However, being independent for Destinee looks a little different than how it does to others. Unfortunately, in this day and age, everything that helps Destinee live her life to the fullest, comes with a hefty price tag. Destinee is currently hoping to get a service dog that can help her with physical tasks, so she can go out on her own and have a furry friend to help her when she goes to college next year. With all of the special training this dog will need, the cost is over $30,000. Destinee is also struggling with the fact that she is in high school and can’t drive like all of her friends do. The process of getting Destinee a vehicle she can drive herself is not only very extensive, but it is also very expensive. 

Destinee tries not to let her disability get in the way of doing the things she loves. She loves to read, paint, write, hang out with her friends, and most of all, play with her zoo of animals at home. She also loves to travel to the most magical place on earth: Disney! Disney gives Destinee a sense of normality because everything there is highly accessible and she gets treated like every other person.

When Destinee goes to college next year, she plans to get an education that will advance her career as a patient advocate. Sheena and Michael (Destinee’s step-father) try to give her as vibrant of a life as possible, without breaking the bank, of course. Looking towards the future, Destinee hopes to truly make an impact on this world and continue to embrace everything life has to offer, no matter the cost.