August is spinal muscular atrophy month. The hereditary disease progressively destroys nerve cells in the brain stem and spinal cord that control essential voluntary muscle activity such as speaking, walking, breathing and swallowing. SMA is caused by a genetic defect and both parents have to be carriers for their child to inherit the disease, which takes various forms, some of them fatal.
Information: www.ninds.nih.gov/disorders/sma/sma.htm.
Ashley Jones is a professional photographer but her favorite photos were taken by someone else. They are portraits of her beautiful daughter, Skylar. After the baby was diagnosed with spinal muscular atrophy, a terminal hereditary disease, close friends donated photo sessions to capture the precious moments that Ashley and her husband, Kyle, had with their child, who died shortly before her second birthday. “There is a comfort to having these beautiful milestones captured with our family that will never be forgotten,” says Jones, who now donates her time taking portraits of other families facing a terminal diagnosis. This spring, Jones founded Atlanta-based Love Not Lost, a nonprofit that will offer photo sessions to families around the country. Information: www.lovenotlost.org.
Q: Let’s talk about Skylar.
A: At her two-month checkup, we were told she had SMA and that she would be lucky to see her first birthday. Early on, Skylar was completely fine and happy but she never developed the ability to sit up on her own or hold her head up. She started to lose the ability to swallow and breathe. Her mind was so sharp. Her favorite movie was "Finding Nemo" and as early as six months old, she would giggle right before Dory spoke whale. I would say she was really, really happy until the last two months when she was uncomfortable.
Q: Was it hard having photos taken?
A: Skylar was three months old for the first session and I was so excited to have that memory captured because we weren't sure she would make it through a surgery. The six-month session was also fun because she was just so frigging cute. The session at 16 months was tougher because the degeneration was starting to become visible and we knew the end was drawing near. We really tried to create fun times together but we also captured some more intimate, serious moments. Having those pictures to look back on now was also helpful.
Q: How so?
A: Even though we obviously miss Skylar terribly, there's a comfort knowing that she is no longer suffering.
Q: What’s it like shooting portraits of other families facing death?
A: I have not been in their exact situation but I am familiar with grief. I am familiar with suffering. I feel like I can enter into these situations and offer comfort and peace.
Q: Is it also hard for you emotionally?
A: Absolutely. As hard as it is, I know it is necessary. We had so many people who didn't know what to say or do with our situation so they didn't do anything or say anything. We really needed that support. We want to be there for other people.
Q: How is the nonprofit going?
A: We are working on building a photographer volunteer network in cities across the country. We are working on our grief-training program for photographers who donate their time. We want to make sure they are fully prepared to walk into any situation. We have a crowdfunding campaign going on this month that people can get to from our website.
Q: You sound like you are coping well. Are you?
A: I am. Even though we had some friends fall off of the planet, we did have amazing support through our church, our really close friends and family members. We saw a grief counselor and really focused on trying to stay positive and being grateful for what we had. As far as photographing other families, it is a beautiful way to remember and honor Skylar. It gives purpose to my suffering.
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