Gavin : Tetralogy of Fallot

Gavin was born with a heart defect called Tetralogy of Fallot. This diagnosis was made while Gavin’s mom was 4 months pregnant. He was born on January 21, 2013 and spent 10 days in the NICU at Valley Children’s hospital. After 14 days of being home he went back to the hospital for his open heart surgery. He spent over a month recovering. He is monitored by a cardiology team and has echocardiograms every six months. He will have another open heart surgery when he is a teen and another as an adult.
Gavin’s is a heart warrior! He loves to explore and be with his mommy and daddy, and as you can plainly see Gavin is absolutely adored by his parents.

Photography by Brittany Wilbur

Michael & Mac : Duchenne muscular dystrophy

We first met brothers, Michael and Mac in 2012 around the time they were both diagnosed with Duchenne Muscular Dystrophy. We are very happy to see them smiling and doing well. Michael and Mac are currently participating in a clinical trial with a medication called Eteperlison. This clinical trial is a confirmatory trial to give more data to the FDA to be able to get a new drug application. This medication of weekly IV’s for the rest of his life that will change the disease to Becker’s Muscular Dystrophy which will give Michael a much better quality of life and a longer lifespan.

Please continue praying that the FDA will approve this life changing drug- This family is proof that the drug is a powerful fighter against the harsh symptoms caused by duchenne muscular dystrophy.

Photo taken soon after the boys were diagnosed with Duchenne muscular dystrophy. 2012

Photography by Brittany Wilbur

Mikayla : acute lymphoblastic leukemia & acute myeloid leukemia

Mikayla is such a joyful and energetic little girl who has shown amazing strength after being diagnosed with acute lymphoblastic leukemia and acute myeloid leukemia. She has undergone chemotherapy, radiation and a bone marrow transplant and is currently in remission. The various treatments caused Mikayla to suffer from a muscle inflammatory disorder which led to her inability to walk or move on her own. Mikayla goes to physical therapy and is now walking and working on her upper body strength.
Mikayla is a fighter and soaks in all like has to offer.

Photography by Brittany Wilbur

Geraldee : metabolic syndrome

Meet Geraldee!
Geraldee is a beautiful little girl who is adored by her parents. She is suffering from metabolic syndrome and is currently on hospice care. Geraldee’s parents know all to well the heartbreak caused by metabolic syndrome because their son passed away from the same illness over a year ago. Geraldee continues to have increased seizures and each day her parents are able to spend with their baby girl is a blessing.
Please join Sweet Nectar Society by sending your love and encouragement to this very loving family.

Photography by Brittany Wilbur

Introducing Victor and his Sweetie Fox!

It is with great pleasure Sweet Nectar Society introduces one of our newest affiliate photographers, Victor!

“As I get older I have learned that life is not a straight line. Yes that sounds obvious and maybe a bit cliché but it holds new meaning when you figure these things out for yourself. What defines success? What defines normal? In the naïveté of youth, I believe we answer these questions in the form of material things or maybe popularity. Maybe that is the definition at that time. Maybe it changes throughout the different stages of our lives. Nonetheless when Fox was born it was redefined for me.

Fox was born with Down Syndrome. I cannot say enough great things about the team at Clovis Community that was there for us when Fox was born. One of the things that struck me when Fox was days old was the geneticist telling us that it was OK to be upset, it was OK to grieve, but that we would realize that we were only grieving about our lost expectations and not the baby before us. I have to say that intellectually I understood that but accepting it took a little longer.

One of the most surprising things to me is how little this has actually mattered to us. Months earlier, during pregnancy, I had a discussion about how difficult it must be to raise a child with Down Syndrome not knowing the road ahead. Now, living in my new reality, it hasn’t mattered greatly. He’s a baby. He will experience the world just as we do although maybe through a different lens. Again, what defines normal? We all begin and end our journey the same way and that is a normalcy of its own.

Now, with that being said, way before Fox and around the time I graduated college I picked up photography. The idea of capturing life as I experienced it was fascinating and buying cool gadgets made it that much more enjoyable. With the idea of capturing life in mind I have carried my camera from the top of Mount Whitney, to the bottom of Death Valley. I have always enjoyed sharing my experiences with others and since Fox was born his is the life I have been sharing. Through Sweet Nectar Society I want to share this hobby of mine with others and capture a snippet of each family’s life in a way that they can share it with the world.” – Victor Gonzalez

We are lucky to have Victor, Rebekah and Fox join our Sweet family, please join SNS in making them feel welcome!

Ivan : Acute and Chronic Respiratory failure, Epilepsy Unspecified

Today we remember our Sweetie Ivan. Ivan was a sweet boy adored by his family. He lit up the world with is joyful smile.
Our thoughts and prayers remain with his loved ones.

Breanne : Down Syndrome

Meet Breanne! This sweet girl has brought so much love, joy, and purpose to her family’s lives. Breanne’s parents were told shortly after she was born that she had several characteristics of down syndrome. It was not until she was two weeks old that her pediatrician confirmed the diagnosis. Down syndrome has not limited Breanne in anyway. She loves to dance, eat, and is quite the fashionista. Bre loves bracelets, necklaces, purses and everything girly! Breanne is perfect and her parents would not change a single bit of their princess!

photography by Brittany Wilbur

Remembering Hendrix

We first met sweet Hendrix in June 2012. This little boy had bright eyes that sparkled and a smile that brought so much joy to those around him. He was a boy on the move. He loved running around… FAST, playing with is trucks, spinning around and exploring the great outdoors.

After meeting Hendrix, we stayed in contact with his family as he continued his fight with cancer. Hendo had long hospital stays, a bone marrow transplant, and many days of feeling yucky, yet he never stopped living each day to the fullest. The days were long and hard but his loving parents and many family members were by his side to comfort him every step of the way. In many ways Hendro was the one comforting others. The resilience this little boy had was uplifting and encouraged everyone around him to stay strong… strong like Hendo.

On April 16, 2013 Hendrix’s body stopped fighting and he was no longer in pain. He passed away at home surrounded by those closest to him.

Today, Hendrix’s memory stays strong through his parents efforts of providing comfort to others going through the diagnosis and treatment of cancer with their children. The Sweet Eats Program in Memory of Hendrix Wille has a home at Valley Children’s oncology unit. Many families are touched daily by the generous food, laundry and essential needs provided through Hendo’s program.

The Wille’s have become like family to us and today, above all other days, we think of you Hendrix. We send our love to your Mommy and Daddy who continue to be strong like Hendo.

Kyle & Jace : Down Syndrome

With great joy we introduce you to our featured Sweeties, Kyle and Jace. This duo is full of spirit, smiles and spunk and we have absolutely fallen in love with their beautiful faces!

When we first read the boy’s nomination, we knew they were a special pair surrounded by a loving family. Kyle was the second child born into the Harder family and brought a little extra to the table- he born with down syndrome. His family quickly learned to slow down and appreciate life to the fullest. As their family continued to grow, the Harder’s had a strong feeling in their heart to adopt a child with down syndrome. They spoke with a case worker and their adoption story was born. The Harder’s were contacted and sweet Jace was given a forever family.

This is a very special family and these two have an extra sweet bond. Please join us in supporting the Harder’s and sending some love to Kyle and Jace!

Photography by Brittany Wilbur

Melanie : Acute Lymphoblastic Leukemia

Sweet Melanie was diagnosed with acute Lymphoblastic Leukemia in early November 2014. She has taught her family many lessons in strength, courage and hope. Melanie’s beauty shines through these photographs. Sweet Nectar Society send our love to Melanie and her family.

photography by Brittany Wilbur

Down Syndrome Awareness Day

3/21 :: DOWN SYNDROME AWARENESS DAY

A sweet shout out to all of our Sweeties who bring a little extra love and joy to this world!
March 21st is World Down Syndrome Day and we hope the everyone knows just how amazing you all are!

Silas : Rubinstein-Taybi Syndrome

Meet Silas!
Silas was born at a healthy 8.4 lbs. His mom says this was the only time in his life he has had chubby cheeks largely due to the fact that Silas has had eating problems from day one. For the past five years he has baffled many doctors with his numerous issues resulting in him being frustratingly “undiagnosed” up until this year. It was a huge relief for Silas’s family when he finally received an actual diagnosed with Rubinstein Taybi Syndrome, “a condition characterized by short stature, moderate to severe intellectual disability, distinctive facial features, and broad thumbs and first toes. Additional features of the disorder can include eye abnormalities, heart and kidney defects, dental problems, and obesity.” Silas is happy, oozes joy out of every fiber of his body and he’s healthy. His family feels blessed. Silas may not be a big talker but he gives the BEST hugs ever!!!
Please join Sweet Nectar Society in sending Silas some love!