Sweet Nectar Society >> non-profit organization >> bio picture

Written by the parents of Alivia:

Our sweet, fun, goofy, spirited, loving Alivia is a 3-year old who has rocked our worlds. She brings incredible joy to our family and fullness to our lives. We have many prayers for her, but one in particular that stands out the most. We want Neurofibromatosis (NF) to go away.

Alivia  was diagnosed with NF when she was just  months old. We began to wonder what was going on when many, many light brown birth marks, those we now call cafe au lait spots,  started appearing all over her body. Those seemingly harmless birth marks opened the flood gates to what we today know to be NF.

NF can cause tumors, often inoperable, to form anywhere a nerve exists in the body. That’s pretty much anywhere – inside and out. From large, painful, disfiguring tumors growing inside the body to tiny, itchy tumors on the surface of the skin to potentially blinding tumors on the optic nerve and anywhere in between, NF can cause a myriad of problems or little at all. It is a cruelly unpredictable, progressive disorder that impacts each and every person differently. Research is advancing but there is no cure.

NF occurs in one in 3,000 births. Fifty percent of all cases are passed on from parent to child while the other 50 percent are spontaneous twists of fate that happen at conception. Alivia’s occurrence was the latter. To say we were caught off guard by her diagnosis is an understatement. We were devastated.

As Christian believers we surrender our worries to God and trust that no matter what Alivia’s future holds that she will always be safe in His arms. As imperfect people we take back that worry,  hold our breath for the what ifs and carry a heavy heart for the many families struggling daily with NF. The only thing we know to do is to hope, pray, trust God, raise awareness and connect with others impacted by NF.

We are grateful for the beautiful pictures from Sweet Nectar Society and thankful for the opportunity it gives us to create more awareness around NF.

For more information on NF visit CTF.org.

photography by Brittany Wilbur

music licensed by SongFreedom | The Great Romance : Live for Today

Langerhans cell histiocytosis is a disorder in which excess immune system cells called Langerhans cells build up in the body. Langerhans cells, normally assist in regulating the immune system, and are normally found throughout the body, especially in the skin, lymph nodes, spleen, lungs, liver, and bone marrow. In Langerhans cell histiocytosis, excess immature Langerhans cells can and usually do form tumors called granulomas. Langerhans cell histiocytosis is not generally considered to be a form of cancer, but the form that Olly has actually is. You wouldn’t know it meeting him though, he is an energetic little boy with an amazing built in support system within his three loving siblings and parents.



Photography by Brittany Wilbur and Carrie Anne Miranda

Song licensed by Song Freedom:  Someday- Rob Thomas

Systemic lupus erythematosus (SLE) is an autoimmune disease, which means the body’s immune system mistakenly attacks healthy tissue. This leads to long-term (chronic) inflammation. Kieran is a lovely young lady with a gentle spirit who is affected by Lupus. Despite the pain and other symptoms Lupus creates, Kieran lives life to the fullest. She loves to sing and dance and hang in out with her brothers and sisters. Kieran’s older sister Alanis joined us for her photo shoot and it was so heart warming to see them laugh and loving each other. Kieran’s advice to anyone struggling is “Stay strong and trust in God.”



Photography by Brittany Wilbur

Music licensed by Song Freedom |  Colbie Caillat, brighter than sunshine


Madelene’s parents feels blessed each day they have their family together. Mady was diagnosed with axonal peripheral neuropathy and recently hospitalized for chronic lung disease. During her hospitalization Mady was intubated, and two days later she stopped breathing. This was her families worst nightmare, but thankfully doctors and specialists at Children’s Hospital Central California moved quickly giving this sweetie a tracheostomy, feeding tube and ultimately saving her life. Madelene continues to go to physical therapy in order to improve and maintain her muscle strength. Madelene is able to raise her hands and legs against gravity which is an amazing accomplishment for Miss Mady.


Photography by Brittany Wilbur

Music licensed by Song Freedom |  APM : Dream

Joe is a sweet little boy that was adopted at 18 months old. He is diagnosed with microcephaly, cerebral palsy, cortex visual impairment, global developmentally delayed, and was considered failure to thrive. His mom said, “It was like getting a 16 pound newborn who was unable to do anything except suck his thumb.” Joey was given a new chance at life when he was placed into an environment that encouraged progress and he is now thriving beyond anyones expectations. Joey is not five years old and adores life. He has a beautiful spirit and contagious smile. Joey’s family says he has brought more love and joy into their family than words could ever say… I hope these pictures give you glimpse of this special little guy.

Photography by Brittany Wilbur Photography

Music licensed by SongFreedom | Lucky Diaz and the Family Jam Band : Explorer