The Big Fake Wedding community is a tight-knit family, and just like real families, we are all about supporting each other. That’s why when Ashley of Shutter Sweet Photography, one of our photographers for The Big Fake Wedding Charleston, came to us about an inspiring and impactful non-profit called Love Not Lost, we were more than happy to share more about her story and the mission behind it. Learn more about this incredible organization below!
The foundation of Love Not Lost is providing free portrait sessions and photo books to those facing a terminal diagnosis to capture and preserve their memory. In addition to the sessions and photo books, we host local events, foster an online community with resources, and continue building lasting relationships to celebrate life and love in the midst of suffering. Our desire is for our community to be a safe place where people are loved, known, and understood in their grief.
It was November 2009, and I didn’t think life could get any better after I naturally delivered my beautiful baby girl, Skylar Marie, and went home with a healthy family. Two months later, our world came crashing down as Skylar was diagnosed with SMA type 1 (Spinal Muscular Atrophy). We were told it was terminal, and learned that SMA is very similar to ALS, so Skylar probably wouldn’t see her first birthday. Not long after her diagnosis, she lost her ability to swallow and needed her first surgery. I asked a photographer friend to come take photos for us just in case she didn’t make it.
Skylar came out of surgery with flying colors, and a few months later, our friends gifted us a professional portrait session. The photographer has a niece with SMA, and ended up donating the session, gave us a photo book, and came back a year later for a second free session with our family. That’s right, Skylar made it past her first birthday and we got to enjoy 21 wonderful months with her before having say goodbye. The photos we have of our family of three have provided so much joy and comfort in her absence and are the only prints we have framed in our home. They have helped through the grief and allowed others to “meet” our daughter since most people just assume that my husband and I don’t have any kids yet.
Whenever I heard of someone facing a terminal diagnosis, I offered a free portrait session as a way to pay it forward. Once Skylar died, I continued to donate sessions for other SMA kids, people with genetic conditions like Cystic Fibrosis, and adults with stage 4 cancers of various types. People frequently ask me how can I do what I do… The suffering and grief I’ve been through, along with the suffering I’ve joined others in, is hard, and it hurts, and there’s pain involved, but there is great joy and much hope too. I know that this gift can help people through some of the darkest times they will face in life, when many people find themselves feeling helpless and alone. I was so grateful for those who entered into our grief and suffering with us in a world where the natural tendency is to run away. Not only do I hope to pay it forward, but I hope to change the way we look at grief and suffering so that we can love people better.
How to get involved:
1. Sign up for our newsletter on our website, www.lovenotlost.org, to be the first to know about upcoming events and new announcements.
2. Follow us on social medial @lovenotlostorg and help spread the word about what we’re doing.
3. Keep an eye out on May 1 as we launch our IndieGoGo Campaign – we will need all the help we can get to meet our goal to start providing photography to those in need!
4. Help us meet people who can help us! Introductions are often under-rated, but they make a huge difference and we value them tremendously!
5. Money is always appreciated if you are in a place where you can donate and sponsor families in need.
6. Volunteer! We need help planning events, getting published, finding donors, writing grants, etc. If you’ve got a heart for helping others, we would love to give you a place to use it.
7. Lastly, speak up! If you have creative ideas, are a huge fan of what we’re doing, or think we can do something better in an area, please tell us. We want to hear from you and value your feedback and fan mail!
Tessa Marie Photography | Ashley Nicole Jones
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