Live Sweet + Love All

Madison :: Neurofibromatosis 1 (NF)

NF is a genetic disorder that effects 1 in every 3,000 births. People born with NF are missing a tumor suppressing protein and as a result, tumors can grow anywhere in the body that a nerve exists. NF effects every person differently. The first sign of NF is light brown birth marks all over the body. For more information about Neurofibromatosis and ways to support research for NF please visit Children’s Tumor Foundation.

Madison has a debilitating tumor that is growing inside her leg; from the top of her bottom to the bottom of her foot. The tumor has made her leg grow significantly faster than the other leg. Maddie’s tumor is intertwined with the nerves in her leg and it causes severe pain. Madison also has a tumor growing in her optic nerve, which could potentially cause blindness.

Madison and her mom fly to Washington, D.C. every three months to see her specialists. Madison has been participating n a clinical trial to stop the growth of her tumors however, her recent scans show the her tumors have continued to grow. She has been bumped from her trial because the treatment was not working for her. There is no cure for NF but Maddie will continue to try different treatment options in hopes one will work to stop the growing of her tumors and help this sweet girl manage her pain.

PHOTOGRAPHY BY BRITTANY WILBUR

MUSIC LICENSED BY SONGFREEDOM, Little & Ashley "Stole My Heart"

Charlie, Ryan, & Sara :: Down Syndrome

Sweet Nectar Society had the pleasure of photographing these three amazing siblings, Charlie, Ryan, and Sara at Heart of the Horse Therapy Ranch in Clovis, CA.

“All three of our sweetie’s are as different as night and day and as capable as the day is long. They love to dance hip-hop, swim, and ride horses to name a few things. Charlie is 17, Ryan is 15, and Sara is 14. They inspired my husband and i to help found the Down Syndrome Association of Central California ten years ago and we have been blessed beyond words because of them. The three of them are powerhouses and they light up a room when they enter.” -Denise (mom)

Photography by Brittany Wilbur & Carrie Anne Miranda

Music licensed by SongFreedom, David Barnes-God Gave Me You

Oliver : Down Syndrome, Congenital Heart Defect

Oliver has been through a lot in his young life. He has already been through 4 surgeries and spent over two dozen nights at Children’s Hospital. Oliver is the happiest little guy with a smile and charm that speaks to everyone he meets! He is loved by many including Mom, Dad and big sister Oceana. They have been blessed beyond measure with this little guy and couldn’t love him more!

Photography by: Carrie Anne Miranda Photography
Music licensed by Song Freedom : Big Heart - Frances England

Dakota : Neurofibromatosis

Dakota was born with Neurofibromatosis (NF), a genetic disorder of the nervous system that causes tumors to grow on the nerves. The first sign of NF is multiple light brown birthmarks called Cafe Au Lait spots. At 4 months old Dakota was sent to a geneticist and tests were ran, and at 9 months the results confirmed that Dakota did have NF. When dakota was two years old a tumor was discovered on her optic nerve in her brain, this tumor was considered stable until 2012 when Dakota started to lose vision in her right eye. As a way to re-stabilize the tumors Dakota underwent 16 rounds of chemo therapy. She had an allergic reaction to the chemo so she was given a break from treatment. It was then that doctors confirmed her tumors were stable again so chemo was no longer necessary.

Dakota and her family are involved with the Children’s Tumor Foundation and look forward to their annual NF family forums. Families who participate are given the chance to meet other families faced with NF and learn from each others experiences. Dakota’s mom April has lobbied for NF and become active in the NF community on her daughters behalf.

Dakota is now 7 years old and an energetic 2nd grader. She enjoys golf with her dad, gymnastics once a week, and loves her after school cheer class. Dakota is very excited and looking forward to taking a trip with her mom to a Taylor Swift concert in Ohio at the end of this month. Dakota is an all around joy!

It is our pleasure to introduce Sweet Dakota!

Photography by Brittany Wilbur

Music licensed by SongFreedom  |  Kathryn Ostenberg : Light Me Up

Emme : Down Syndrome, Atrial Septal Defect

Emme’s parents were shocked to find out they were expecting a baby because it had been 20 years since they had their first and only other child; they had just figured that door had long been closed. During pregnancy Emme’s family learned she would be sporting “designer genes” but they were excited to be given another baby. Emme was welcomed into this world where she is surrounded by family and friends that absolutely adore her.

Emme was born with a small hole in her heart that did not close on its own and required surgery. Today Emme is thriving and such a joy to be around.

Meet Emme.

Photography by Rochelle Mort

Music licensed by SongFreedom | Plain White T’s “1, 2, 3, 4”

Kaylee : Profound deafness, Aniridia

At birth Kaylee was diagnosed with Aniridia, meaning without iris. As of now her doctors do not know how much she is able to see, but it is believed she can only see a few feet in front of her. Kaylee was also born with profound deafness in both ears which prevented her from hearing until she received cochlear implants which enables her to hear. Kaylee is learning how to process the sounds and is easily startled by the new noises she is hearing. Each day is a new learning experience and her family has great hope for what the future has to offer sweet Kaylee.

Photography by Rochelle Mort

Music licensed by SongFreedom | Little & Ashley "Fly Me Away"

Destiny :: Acute Lymphoblastic Leukemia

Destiny’s family live in Bakersfield and have had to travel to Fresno frequently since her diagnosis over a year ago. There has been many ups and downs and little Destiny has been such a trooper through all of it. She is a strong willed little thing and she loves, bubbles and painting and spending time with her family!

Photography by: Carrie Anne Miranda Photography

Music licensed by Song Freedom : Little Bright Star- Frances England

Ava | Down Syndrome

I met Ava for the first time during a family photo session before Sweet Nectar Society was created. I instantly fell in love with this precious princess and her family. Ava was a huge inspiration to me when creating SNS and her family has been an amazing support to SNS and for that I am grateful.

Ava has continued to warm my heart each and every time I get to see her, she greets with arms wide open and smiles from ear to ear. Ava has a way of making you feel like the most important person on this planet. Like every little diva, miss Ava loves to carry around her purse and she has developed quite the collection. I adore her independent personality and envy her carefree spirit.

Please enjoy this glimpse into Miss Ava’s world :: LOVE.

PHOTOGRAPHY | BRITTANY WILBUR

MUSIC LICENSED BY SONG FREEDOM | JESS PENNER :: ALL SMILES

Payton :: Acondroplasia (Dwarfism)

Payton has the most common form of Dwarfism known as Acondroplasia, this comes with many doctors visits, tests and a different perspective on life. She will need to have her legs fixed and then casted sometime in the near future. Payton takes it all in stride, she is a little girl with a BIG heart and even larger personality. She brings so much happiness and light to her parent’s life and is a great big sister! She is silly, funny smart and a little sassy.

Meet Payton:

Photography by: Carrie Anne Miranda Photography
Music licensed by Song Freedom : Dreamin - Jessica Sonner

Adilene :: Acute Myeloid Leukemia

Strong, beautiful, bold and brave. All words that describe little Adilene. She brought joy and laughter to her parents and nurses that cared for her and especially her two wonderful loving sisters. She was taken too soon from this world but we honor her memory and cherish her spirit. Fly high sweet girl.

Hannah :: Down Syndrome

Hannah was born 5 weeks early, and soon after birth her parents learned she had down syndrome. She had open heart surgery at 3 months old, but since then has led a healthy and happy life. Her parents realize what an amazing gift they have been given in Hannah. She is a very social, fun loving girl, with a wonderful personality and shares her joy and sweet spirit with everyone around her.

Photography by: Carrie Anne Miranda Photography
Music licensed by Song Freedom : Amos Lee- Sweet Pea

Reagan :: Congenital Myopathy

A dream is a wish your heart makes when you’re fast asleep. In dreams you will lose your heartaches. Whatever you wish for, you keep. Have faith in your dreams, and someday, your rainbow will come smiling through. No matter how your heart is grieving, if you keep on believing, the dream that you wish will come true. -Cinderella

Reagan was born 10 weeks early and was diagnosed as having congenital myopathy. Congenital myopathy is a term for any muscle disorder present at birth. This defect of either the brain, stimulating nerve, or muscle causes weakness throughout the skeletal muscle. Congenital myopathies account for one of the top neuromuscular disorders in the world today, comprising approximately 6 in 100,000 live births every year. Reagan was very sick at birth and spent 3 months in the NICU. She had a g-tube put in before she was able to go home in order to ensure she was getting the proper nutrition, she was able to get her g-tube removed as she grew. Reagan was also born with hydrocephalus, water on the head, which is typically treated by inserting a shunt, however Reagan has been progressing so well her doctors do not believe a shunt is necessary at this time.

Reagan is now a 5 year old precious little girl who loves Cinderella. Her congenital myopathy effects her muscles, she tires very easily but if she does not continue to use her muscles she may loose her strength. Reagan’s lungs are effected by her disorder and she has a hole in her heart. Despite all of her health struggles Miss Reagan shows such an incredible strength and is doing really well. She will continue to see several doctors and specialists at Children’s Hospital Central California to make sure she continues to thrive.

PHOTOGRAPHY | BRITTANY WILBUR

MUSIC LICENSED BY SONGFREEDOM.COM | ALLIE MOSS : RALLY

Sweet Nectar Society

PHOTOGRAPHY WITH A PURPOSE