The first photograph ever taken was in 1826. It was a french photographer who captured a still moment of scenery from a french countryside. Shadows playing amongst themselves against the light, bouncing off the buildings and dark landscape – it was a moment in time. A moment which reminds us of a past we will never see again, but for which we can dream, reflect upon and admire.
Photography plays an important part in memory and time. When we have a child, adult, sibling, or friend with a rare disease, few may have a life time of memories, where others have but only a fraction of what they could hope for. And when time on this earth is unpredictable because of the uncertainty of a disability or disease, a photo can make all the difference for memories. Memories of love, laughter, sweetness, peace, and hope. Memories of life.
Meet Sweet Nectar Society.
In 2010, the Wilbur’s had a health scare with their little princess Juliet. “Failure-to-Thrive” was her diagnosis. A series of tests were conducted to determine the reason for Juliet not growing. After three months of weekly blood work, numerous appointments with specialists, and several serious possibilities, Juliet was diagnosed with a hypoactive thyroid and the possibility of having transient hypogammaglobulinemia, an immune disease. With a little medication, and added calories to her daily diet, Juliet slowly reached her growth goal and she is now doing very well.
While still unsure what was wrong with her baby, Brittany Wilbur began taking pictures of every aspect of Juliet’s day-to-day life; each moment was treasured. Brittany started thinking of ways she could use photography to give these moments to other families who are going through similar situations.
The Global Genes Team had the opportunity to interview Brittany Wilbur, Founder of Sweet Nectar Society about her inspiring idea to capture children suffering from disability, cancer and rare disease.
GGP: Your web-site states your inspiration came from working with a child suffering from Lymphoblastic Leukemia, what has it been like working with children who live with disabilities and serious illnesses?
It has been an inspiration to work with each and every one of them. One of the first families I worked with, their daughter Ava was diagnosed with Down Syndrome. It was my first experience with a child with special needs. I fell in love with her immediately. She is the sweetest little thing. Although I had known her prior, she was one of the reasons for starting the business. Special needs families are in situations that are not expected, so living life and doing everything they can to fulfill their happiness – for us to give them pictures and the memories they deserve is a part of fulfilling their happiness.
GGP: From the perspective of a photographer – what does capturing hope look like to you?
Raising awarness is our mission. When we photograph a child, it brings that “understanding or knowing” that people who are affected can relate to on our website – and thus raise awareness to others who may be diagnosed with a similar diagnosis. Our hope is to bring awareness to people who may not come in contact with someone who has been diagnosed with cancer or rare disease. A photograph gives them a better understanding of what the families are going through. In addition, our photographs bring hope to the parents; although their children are terminal or experience physical limitations, our hope is that we will capture that special moment, special look, sparkle in the eye – and give a reminder that they are beautiful, the world will see them as they are and appreciate them for being special.
GGP: Aside from providing families with lasting memories, what furthers your mission for the children you serve?
Raising awareness. We have gotten involved with several organizations, such as Leukemia and bone marrow registry. We started our operation late February 2012 and have dreams and goals of working with many organizations.
GGP: Do you travel in your business? If so, what is the farthest distance you have gone to reach a family who wanted their child photographed?
We are currently located in Central California and have traveled as much as 4 hours for a photo session. Soon, we plan to attend Camp Agape, a camp for children diagnosed with Cancer – and that will be the farthest so far.
GGP: Do you have a favorite photo session?
I have a few and quite honestly, it would be too hard to choose. Most recently, I photographed an 8 year old by the name of Lorena. She has just relapsed with Cancer and yet has the most positive outlook on life. She is terminal, but Lorena is incredibly inspiring, living every day to the fullest and has shown us to live the same. She lives in Bakersfield, approximately three hours away and we just completed her session.
GGP: How did you come up with the name “Sweet Nectar Society?”
I wanted a bird – as our logo – because birds have freedom and are whimsical. I loved the hummingbird as it symbolizes, “Courage-Strength-Hope”. The hummingbird has no enemies, flies in an infinity symbol motion and backwards. To me, it seemed to represent a child going through a struggle. As hummingbirds strive to get to one plant to the next – searching for that sweet nectar; it was the perfect symbol for the many who suffer disabilities and disease struggling and searching for their sweetness in life.
GGP: Is there anything you would like to share with the RARE disease community about your organization?
I have been amazed by the family invovlement with genetic disorders. They truly form a special type of bond, in and out of their communities. In the rare disease world, you don’t have to do it alone. Finding hope whether its cancer, a genetic anomoly such as down syndrome, a ultra and/or rare disease – all children and families have the right to their memories.
Sweet Nectar Society is a new organization that brings together a network of talented photographers throughout Central California for one important mission—to capture the hope, courage, and strength of children undergoing treatment for serious illnesses, disabilities and injuries, and provide their families with lasting memories.