Live Sweet + Love All

Tania : Rhabdomyosarcoma

It is with broken hearts we remember Sweet Tania. She passed away after a long and difficult battle with Rhabdomyosarcoma. This little princess brought so much joy to her loved ones and taught everyone around her how to live each moment to the fullest.

photography by Jess Cadena

Olivia : Down Syndrome

Olivia’s mom learned when she was 5 months pregnant that their baby would be born with down syndrome.
Two years later- she’s a little lady that knows what she wants and how to get it! Her parents just adore her and think she is the sweetest little girly!

Lean more about Down Syndrome:
National Down Syndrome Society
Get involved with local organizations supporting Down Syndrome Awareness:
Down Syndrome Association of Central California

photography by Amber Schneider

Ariana: Down Syndrome

Ari is an adorable sweetie who rocks and extra chromosome. Ariana was born in November 2010 and was diagnosed with down syndrome at 6 days old. Ari is, in every way, a typical toddler with energy and personality to spare. She is a loving and amazing big sister and teaches her family something new everyday. Ariana has a smile that lights up the day and we LOVED our time photographing her. Please join Sweet Nectar Society in encouraging Ari and her family.

photography by Carrie Anne Miranda & Brittany Wilbur

Gavin : Cystic Fibrosis

Gavin is all BOY- running, jumping, and playing super heroes are some of his favorite things. At the tender age of 4 weeks, Gavin was diagnosed with cystic fibrosis, a life threatening disorder and one of the most common chronic lung diseases in children and young adults. Gavin is followed by an amazing team of doctors at Children’s Hospital Central California and seen for check ups every two to three months and requires “tune-ups” which are extended stays in the hospital to administer IV treatments for his CF. He has been hospitalized three times. During his first stay it was discovered that Gavin also had a heart condition called coarctation of the descending aorta, basically a narrowing of the aorta which does not allow adequate blood flow to his lower extremities or organs. Gavin had corrective heart surgery in August 2013 and is currently recovering well.

photography by Brittany Wilbur

Dean : Down Syndrome

Dean is one of those kids that just brings so much joy to the all of the lives around him. He was born a healthy baby boy with just a little something extra! Having down syndrome does not slow this little guy down one bit! He is always on the go, walking, climbing, running his way through life, teaching others patience, kindness, sensitivity and love! THANK YOU Dean for sharing your smile with us!

photography by Carrie Anne Miranda

Joeseph : Duchenne Muscular Dystrophy (D.M.D.)

We absolutely love Joe Joe! Over the past year we have been able to see Joe several times and each time we are reminded what a spunky little boy he is- ALL BOY! He loves to go, go, go and GO FAST! He always sports his big smile and big personality! On January 6, 2012, at 13 months old, Joe was officially diagnosed with Duchenne Muscular Dystrophy. His family is extremely involved and supportive in finding new treatment options to best ensure Joe’s comfort. His parents share his journey on the Go Joe Facebook page- they have created a platform to raise awareness of DMD and place for families to come together and support their ups and downs of life with DMD.

Joe’s parents recently gave us an update. “There is no approved treatment to slow progression and unfortunately the treatments that are trying to get approval will only help about 13% of those affected by Duchenne, Joe Joe not being in that population. There are some great things going on in research and we are praying that there is something in the pipeline that will help him!”

“Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year). Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures.

Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their late twenties.

Duchenne can be passed from parent to child, but approximately 35% of cases occur because of a random spontaneous mutation. In other words, it can affect anyone. Although there are medical treatments that may help slow its progression, there is currently no cure for Duchenne.” -Go Joe Facebook Description.

Remembering Marietta

Tonight we remember Marietta and send our love to her family.

Marietta was born with an unknown genetic disorder. Her parents did not learn of her developmental issues until she was about 3 months old and they noticed visual impairment. After that point more and more problems began to arise: seizures, severe developmental delays, autism, to name a few of her major struggles. During her first eight years she became strong enough to crawl, get into the sitting position, and pull herself up with support. She LOVED watching TV, especially shows with songs. She enjoyed being tickled and showing her sweet smile. By the age of 9 she had become very weak due to her seizures. In 2005 her scoliosis was so bad that she had to endure spinal fusion surgery. Since then she has continued to regress to the point where now she is unable to move on her own, or sit up. In November 2014 Marietta passed away.
I will never forget my session with Marietta and the conversations I shared with her mom Coby. Coby had an unconditional love for her daughter and would go to the ends of this earth to ensure her daughter was well taken care of. She devoted herself to Marietta’s needs and comfort. It was beautiful to witness Coby’s patience, strength and gentleness with Marietta.

Please join Sweet Nectar Society in sending prayers to Marietta’s family for continued peace and comfort.

Richard : Congenital Heart Defect

Meet Richard. It was apparent that Richard felt extremely comforted while his dad was holding him during his session. The way he looked at his daddy and laughed was a very heart warming moment.
Richard was born with a congenital heart defect that was not discovered until after he was born. He was immediately rushed to Children’s Hospital Central California for surgery. Richards heart was backwards, it did not have the needed artery connections, and was missing a valve. This Sweetie has spent many months in the hospital. On top of heart issues Richard has respiratory issues due to the lack of blood pumping to his lungs which causes him to need a CPAP at times. He is currently given 24 hour nutrition through a J-tube but is working on eating by mouth. Richard has had two surgeries and will require more in the future. It is not out of the question that one day he will require a full heart transplant but at this time he is okay with the reconstruction that has taken place.
Richard is blessed with very loving parents and his 5 siblings. This has been a very difficult year for his family because on top of Richards health issues his mom suffered a massive heart attach and is currently on the transplant list.

Please join Sweet Nectar Society and send your love and prayers to this sweet family!

photography by Brittany Wilbur

Victor : Cerebral Palsy, Seizure Disorder

Victor was born with Cerebral Palsy due to complications during birth. Victor also has a seizure disorder that has been under control with the help of medication. He is non-verbal but speaks through his amazing smile. Victor is a diehard 49ers fan and loves going to games with his family. Please join us in supporting Victor and his family by liking his post and leaving him a sweet comment!

photography by Brittany Wilbur

Jamie : Acute Lymphoblastic Leukemia

This little guy reminds us to enjoy the little things in life, like feeling the warm morning sun on a shiny bald head! Jamie is undergoing chemotherapy that will continue for three years after being diagnosed with Acute Lymphoblastic Leukemia August 2013. Jamie is brave, energetic, and is very intelligent.
Let’s show Jamie and his family that we stand behind them in the fight against cancer.
Be on the look out for more of Jaime very soon- he is an honored Sweetie during a very special upcoming project!

photography by Carrie Anne Miranda

Adaliese : chromosome deletion 3p14.1, mitochondrial deficiency complex II & III

Addie has a rare chromosome deletion for which there is very limited medical information available. This has caused a number of medical challenges including mitochondrial deficiencies which affect a number of systems. Adaliese’s GI function is most affected- she is now fed via a J tube connected directly to her lower intestine 24 hours a day. Her liver does not function correctly so she struggles with hypoglycemia and she has respiratory issues. Adaliese has developmental disabilities and is generally non-verbal.
This Sweetie was such a joy to be around and we are so thankful to have the opportunity to share her beautiful smile with the world. Join us in sending some love her way!!!!

photography by Brittany Wilbur

Micah : schizencephaly, cerebral palsy, epilepsy, trachealmalasia

Micah is a miracle to his family. At 8 months old, weighing only 9 pounds, Micah was adopted and brought home from Ethiopia. After an assessment he was hospitalized with failure to thrive due to cerebral palsy caused by schizencephaly- meaning his brain did not develop normally and there is an empty space in the middle. This causes him many limitations in mobility and communication, however this does not limit his personality. Throughout his session Micah flashed his bright smile and hummed the sweetest song. Please join Sweet Nectar Society in showing Micah and his family some love by liking or commenting and sharing this post!