Skylar Marie came into the world as a beautiful healthy baby. It wasn’t until 2 months later that her and her family’s world would change forever.
She was diagnosed with Spinal Muscular Atrophy Type 1. This rare disease is very similar to ALS and targets approximately 1 in 10,000 people with mild to severe muscle weakness and degeneration. The varieties of spinal muscular atrophy vary based on severity and age in which the condition was developed. To learn more about SMA Type 1, click here.
Shortly after the heart-wrenching diagnosis, Skylar started losing the ability to swallow properly. Her parents got a photographer to begin documenting her life. After a successful surgery, Trey & Lauren Boden offered the family a professional portrait session. Because Tessa has a niece with the same disease, she gave them the experience for free, along with a photo book and a second free session a year later.
Skylar made it passed her first birthday, and they were able to spend 21 magical months together as a family before it was time to say goodbye.
The photos taken of Skylar’s brief but wondrous life are hanging all around the house as reminders of the short and sweet angel visit they experienced. The photos have helped them cope with the grief and given house guests the opportunity to “meet” Skylar.
Skylar’s mother, Ashley, is also a photographer. She was asked to take photos of her friend Brooke’s son who was born with complications and put on life support. This was around the time that Skylar was only 6 months, so it was difficult for Ashley to capture the suffering, knowing that she would be experiencing the same grief.
Ashley shared her story on Love Not Lost:
“Being a photographer myself, I saw the value in photos, but it wasn’t until Skylar was gone that I understood the depth of what a tangible photo could do for those left behind. As Skylar’s memory gets father away as each year passes, those photos bring her close again.
After Skylar’s death, Ashley continued donating sessions for other families with SMA, genetic conditions like cystic fibrosis and more. She finds it rewarding to capture tangible moments that can live on forever as monuments.