Live Sweet + Love All

Kynsley :: Poland Syndrome

Meet Kynsley! Kynsley has Poland Syndrome, individuals affected are born with missing or underdeveloped muscles on one side of the body, resulting in abnormalities that can affect the chest, shoulder, arm, and hand. Kynsley does not let this diagnosis get in her way!
Kynsley’s Mom shared with us that Kynsley is a Disney Princess lover, Barbie fanatic and future American Idol star! You can always find Kynsley dressed in her “Pwincess Dwesses” dancing around the house singing songs. Kynsley’s family knows the future holds big things for Kynsley and we can’t wait to see what those big things are!

PHOTOGRAPHY DONATED BY CARRIE ANNE MIRANDA

Bin :: globoid cell leukodystrophy

Meet Bin! Sweet Bin was diagnosed with a rare disease called Krabb’s Disease. Bin is currently receiving treatment at Valley Children’s Hospital. Please join us in encouraging this sweet baby and his family.

Mayo Clinic: ‘Krabbe (KRAH-buh) disease is an inherited disorder that destroys the protective coating (myelin) of nerve cells in the brain and throughout the nervous system.

In most cases, signs and symptoms of Krabbe disease develop in babies before 6 months of age, and the disease usually results in death by age 2. When it develops in older children and adults, the course of the disease can vary greatly.

There’s no cure for Krabbe disease, and treatment focuses on supportive care. However, stem cell transplants have shown some success in infants who are treated before the onset of symptoms and in some older children and adults.

Krabbe disease affects about 1 in 100,000 people in the United States. It is also known as globoid cell leukodystrophy.”

PHOTOGRAPHY DONATED BY CARRIE ANNE MIRANDA

Emily :: Acute Myeloid Leukemia

Meet Emily! Emily’s personality and active spirit shines through these photographs! This girl is courageous, strong and has loads of confidence in who she is! She proudly sports her team’s colors and her orange mohawk beanie was a sample fashion piece during treatment for Acute Myeloid Leukemia at Valley Children’s. Please join us Sweet Nectar Society and give a huge shout out to Emily!

PHOTOGRAPHY DONATED BY MACKENZIE ANKER

Emilio :: NON HODGKIN’S LYMPHOMA

Emilio has shown amazing strength since being diagnosed with non-hodgkin’s lymphoma in February 2014. Today he is cancer free and living each day to the fullest. When he was diagnosed the tumor in his chest was so large that it was pressing on his arteries and his airway. He had to be airlifted to Stanford for a few urgent procedures. Following the surgeries scans continued to show no sign of the tumor and the main goal was keeping it away! He continued to receive his maintenance phase of treatment and received spinal tap chemo and chemo pills, as well as treatment for side effects such as seizures and blood clots. After loosing his hair to cancer treatment Emilio decided each and every bit of hair is like a trophy and he proudly sports long “messy hair” because he has earned it!!! We are so proud to say Emilio beat cancer and has a new outlook on life. Emilio is a kind and strong guy, who will do great things! *Since his Sweet Session Emilio got a stylish new hair cut. Please join Sweet Nectar Society in congratulating this brave and courageous boy! PHOTOGRAPHY DONATED BY BRITTANY WILBUR

Josiah :: Forever in our Hearts

Sweet Josiah will forever be in our hearts.

It is our prayer these photographs tell Josiah’s story; Josiah was a beautiful baby boy, abundant in tender love. He had deep eyes filled with wonder and sweet lashes that had the most perfect curl. He had ten little toes, ten fingers and the most kissable chubby cheeks. Josiah’s tiny hands held his momma’s finger with gentleness as she softly stroked the top of his fuzzy little head. The tubes and machines were only there to assist Josiah with his super strength which helped give him these priceless moments that will forever be cherished. It is our prayer that these sweet photographs will forever tell Josiah’s sweet story.

Josiah spent his four months of life at surrounded by dedicated nurses, doctors and his devoted family who loved and cared for him. He was on dialysis because his low functioning kidneys, he had a heart defect which caused multiple valves to pump blood to a single chamber, he was recently diagnosed with pulmonary hypertension, and he had a cleft pallet and cleft lip. This little guy gave it his all and fought hard on a daily basis.

We are so thankful for Corinne McCombs Photography, Corinne is an amazing photographer from the Bay area who heard of Josiah’s declining health and immediately volunteered to provide our Sweetie a session.

Makayla :: Down Syndrome

Meet Makayla! Makayla is full of adventure and spunk. Down Syndrome does not define this amazing girl. Makayla has so much to offer this world and we look forward to cheering her on along the way!
Please join Sweet Nectar Society in sending Makayla a little extra love!

PHOTOGRAPHY DONATED BY BRITTANY WILBUR

Genevieve :: Forever in our hearts

We remember Genevieve. Sweet Genevieve passed away after a hard and strong fight against Sandhoff Disease. She was loved by many and will be forever missed. Please join Sweet Nectar Society in sending your love to her family during this time.

PHOTOGRAPHY DONATED BY JESS CADENA

Jefferson: Spina Bifida

This is Jefferson! Jefferson was born with an acute Mengiocil opening in his lower spinal column, commonly known as Spina Bifida. At this time the effects are unknown as far as severity. Despite his challenges, he is one of the happiest babies you will ever meet! If you’ve met him, you love him. Jefferson has a twin sister, along with five older brothers. He loves to follow them around!

Jefferson has undergone five different surgeries. He wears his AFO braces everyday help his legs continue to grow correctly. Jefferson has worked hard to get to where he is today, and he is now able to walk! Join Sweet Nectar Society and Jefferson’s family in cheering on this sweet boys’ accomplishments! Way to go, Jefferson!

PHOTOGRAPHY DONATED BY: BRITTANY WILBUR

Evie: Osteogenesis Imperfecta

Meet Evie! This beautiful girl was born with a rare genetic condition called osteogenesis imperfecta, or more commonly known as brittle bone disease. In her first four months, Evie has suffered from more than 12 fractures. Osteogenesis imperfecta will always have an effect on sweet Evie’s life, but she continues to grow into a smiley and happy baby girl.

Because of her condition, Evie will face many challenges in her life. Her condition leaves the future a mystery, but we continue to cheer this beautiful girl on throughout her journey! You’ve got this, sweet Evie!

PHOTOGRAPHY DONATED BY: ALEXANDREA SMITH, DAPHNE MAE PHOTOGRAPHY

Juliana: Acardi Syndrome

This beautiful girl is Juliana. She was born with Aicardi Syndrome which causes the two hemisphere’s of the brain not to speak to each other as she’s missing connective fibers between them. Because of this, Juliana is non-verbal. She loves to lay on her tummy, and also loves her twin sister.

Juliana is known for saving her sweet smiles for special times with her family, and also for always wearing pretty bows in her hair. It takes some patience, but when Juliana smiles is could light up the whole world. Join us in celebrating this sweet girl’s life. Lots of love to sweet Juliana!

PHOTOGRAPHY DONATED BY: BRITTANY WILBUR

Faith :: tricuspid atresia, Hypoplastic right heart syndrome, stroke

Meet Faith! This sweet girl is a fighter to say the least. Faith was born with half a heart, known as Hypoplastic right heart syndrome. Her right chambers did not develop. At 2 months old, Faith suffered a stroke and mild brain damage. Since then, she has undergone 3 open-heart surgeries and 4 heart catheterizations.

Faith continues to fight and beat the odds. To this day, she has learned to walk and is now in school. This sweet girl has not had an easy life, but she is making the most of it as she continues to thrive. Join Sweet Nectar Society in cheering Faith on! Go get ‘em, gorgeous girl!

PHOTOGRAPHY DONATED BY: BRITTANY WILBUR

Owen: West Syndrome/ Infantile Spasms

Meet Owen! This little guy has already faced many challenges in his sweet, little life. Born a little over 4 weeks early, Owen did not seem to have any apparent health issues. When he was about 4 ½ months old, Owen began to experience seizures and was shortly after diagnosed with infantile spasms. Two months after that, he was diagnosed with developmental delay due to a microscopic abnormality in his brain.

Owen has proven himself to be a fighter, as he works with an early intervention and occupational therapy two times a week and continues to catch up! His family pushes to live each day to the fullest, because there is no say in what tomorrow may hold. One in 20 children with Owen’s diagnosis do not make it to the age of 2, but this guy is a fighter! Join Sweet Nectar Society, as we cheer on sweet Owen and his family, and pray for more answers on his diagnosis. Fight on, little warrior!