Aidan :: Diffuse Midline Glioma on the spine, stage 4
Meet Aidan. Aidan is so loved by his community. His friends and loved ones have surrounded this strong boy with support and encouragement after his cancer diagnosis and a surgery that left him paralyzed. Aidan charmed his way through his Sweet Session with Carrie Anne Miranda and we know he is going to steal your heart too. Please join Sweet Nectar Society in sending Aidan some extra love!
PHOTOGRAPHY DONATED BY CARRIE ANNE MIRANDA
Naveah :: Down Syndrome
Meet Naveah! We promise that once you see these smiles- your heart will be filled with joy! The love between these sweet sisters is truly magical!
PHOTOGRAPHY BY MACKENZYE ANKER
Venus, Violet & Valentino
This sweet family is so precious and strong. They are full of laughter and love while they support one another through their health issues.
Valentino LOVES Superman and the Justice League. Like most little boys Valentino likes to play video games, watch football, and wants to be a pastor when he grows up. Valentino was born premature and spent a long time in the NICU. He was diagnosed with VSD, ADHD and Long QT type 8 syndrome.
Venus is two years old and has super sass! This is a girl who knows what she wants and has the spunk to get it! She loves her baby dolls, loves to play dress up, panting her nails and she loves the water. Venus was also born premature, diagnosed with Long QT type 8 syndrome. She has endured several surgeries and is closely monitored due to her heart irregularities.
Violet has struggled with her health since she was a baby. She gets sick often and has a very hard time getting healthy. She has had multiple ear infections which led to hearing loss in one of her ears. Violet has had phenomena 3 times. She has had countless MRI’s, labs drawn, specialist visits and at 5 years old was just diagnosed with having an autoimmune disease. Now Violet is in the right direction to receive the answers she needs to get healthy.
Long QT type 8 syndrome is a rare heart genetic heart disorder that can cause fast and chaotic heart rhythms. If untreated this is extremely dangerous and can cause fainting spells, seizures and can be fatal. There are treatments for this syndrome that include medications, implants and surgeries.
PHOTOGRAPHY DONATED BY BRITTANY WILBUR
Ismael & Joaquin :: Autism
Meet Brothers Ismael and Joaquin! Both boys are continuously teaching their family how they see the world from their perspective. They have both been diagnosed with autism. Ismael is a sweet boy who keeps his family active and smiling. Although Ismael is non-verbal he has his way of communicating his feelings. Big brother Joaquin is able to speak a few phrases and is always learning new things. He loves to run and play!
PHOTOGRAPHY DONATED BY ANGELA ELLER PHOTOGRAPHY
Noah :: Forever in our Hearts
Noah was a beautiful baby boy born into a loving family who cherished everything that made him unique. The unconditional love began immediately after his mom found out she was pregnant and only became stronger when doctors told her Noah had Trisomy 13. Noah was not expected to survive but his mommy never gave up on him and welcomed him with hugs and kisses. Noah’s days on earth were spent in the comfort of his loved ones arms. We continue to celebrate his sweet little life and will forever remember Noah!
PHOTOGRAPHY DONATED BY CARRIE ANNE MIRANDA
Sarah :: Down Syndrome, USD
“Sarah’s hunger for life and her sassy personality has kept us all strong!” -Mom
PHOTOGRAPHY DONATED BY DAPHNE MAY PHOTOGRAPHY
Calvin :: Autism & Kingston :: Autism, Dandy WalkerMalformation, Arthrogryposis
Double the Sweetness with twins, Calvin & Kingston.
Their mom shared the boys story with Sweet Nectar Society. We are so thankful she followed her heart- despite the repeated attempts to have her terminate her pregnancy- Calvin and Kingston are blessings and bring so much joy to this world!
“Calvin and Kingston are twin boys. They are my miracle babies. I was told at the beginning of my pregnancy that I would miscarry because I was in so much pain. Doctors were wrong and my pregnancy started to go a bit smoother until I hit 17 weeks. I went in for an ultrasound and they found that Kingston had a lot of fluid in his cerebellum which has blocked his brain from forming properly. The doctors told me he would die in the womb and to make it easier on myself and my family, that I should abort him. I just couldn’t do it. I wouldn’t be able to ever forgive myself because I’d always be thinking “what if they were wrong…” As time passed through my pregnancy, doctors from SFSU invited me to get an MRI when I was 20 weeks in San Francisco. After the MRI, a panel of six doctors went through and each told me that I should abort Kingston and that he’d either be stillborn or not able to function at birth. I felt very uncomfortable and very pressured. I again said no. They called me all the way up until I was 26 weeks trying to change my mind on having an abortion. It was just terrible and made me feel even more worse than I already felt. At 29 weeks I went into early labor and was admitted to CRMC. They stopped the labor and had me on bedrest until I was 36 weeks. At this time we had no idea Kingston Had Arthrogryposis until he was born. When the twins were born, Calvin got to stay with me, and Kingston stayed in the NICU for five days. It was incredibly difficult in the beginning when they came home. I was so scared that Kingston would stop breathing during sleep and was constantly checking him since the doctors had me paranoid. We went through so many doctors appts, up and down CA up until he was 3. Calvin was diagnosed with Autism when he was two and a half. One of Kingston’s specialists from City Kids came over weekly for visits with Kingston, and noticed signs very early in Calvin. I had no idea anything was amiss. They were both my first pregnancy so him being non-verbal, giving no eye contact and wanting absolutely no interaction with children didn’t have me thinking “maybe something is wrong here” I thought he was just a shy boy. Thankfully because of Kingston’s specialist, she sent a referral over to CVRC and we got him evaluated all the resources we needed, including more education for myself since I knew very little about Autism then. They both started special education preschool programs when they were two and a half. Both went to separate schools because Kingston needed to be in a program that worked with children with more severe disabilities. They are both in Kindergarten. We didn’t have much issues with Calvin until he hit kindergarten, where he was being bullied because he is a bit different socially and has some behaviors that confused the other kids like his hand flapping and repetitive behaviors, the kids at this age still don’t understand. It was definitely hard at the beginning of the year. Calvin and Kingston are six, they are are the sweetest, happiest kids. They are the best big brothers to little sister Aubrey, who is four. Kingston is non-verbal and in a wheelchair and Calvin is verbal, very hyper & repetitive. Two very silly boys.”
Please join Sweet Nectar Society in encouraging this courageous family and sweet boys!
PHOTOGRAPHY DONATED BY STEPHEN BRYANT
Paisley & Cooper :: Congenital Complete Atrioventricular Heart Block
Cooper was born on February 28, 2013 with Congenital Complete Atrioventricular Heart Block. From day one he has been full of life and all boy, anything round to him is meant to be thrown from apples to oranges. He is determined to play baseball for the San Francisco Giants, his favorite player is Buster Posey. He loves all animals and loves to visit the zoo as much as possible. With his slower heart rate, his body tolerates it very well, we are praying we can get him as big as possible before his pacemaker is needed and can then be transvienously placed. He lives life to the fullest.
PHOTOGRAPHY DONATED BY Carrie Anne Miranda Photography
Sidelle :: BOSCH-BOONSTRA SCHAAF OPTIC ASTROPHY SYNDROME
“Sidelle is a sweet girl who has places to explore and people and things to see! She doesn’t let Bosch-Boonstra Schaaf Optic Atrophy Syndrome get in her way. There are only several dozen people in the world known to have Bosch-Boonstra-Schaaf Optic Atrophy Syndrome. Sidelle is one of a few who have donated a small skin biopsy to contribute to the continuation of research being led by the original scientists who discovered this rare gene mutation (NR2F1) at Baylor University in Texas. Since she was diagnosed at one and a half years old via exam sequencing, she’s learned to compensate for her pale optic nerves, Cortical Visual Impairment (CVI) and Intellectual Disability. She’s one tough and feisty cookie but just as sweet as one too. She may have extremely poor depth perception, a narrow field of vision and difficulty processing what she sees but she’s more than willing to explore each new environment to make sense of it in her own way.She has a Curious Quotient that’s off the charts! Since she learned to walk at about 2 1/2 years old, she’s absolutely everywhere. She may stumble and trip but quickly regroups, picks herself up and is on her way. Sidelle is receptively bilingual and understands French and English. She does not use words at this point but communicates with sign and is starting the PECS method. Based on her personality and how she lives her life day to day, if she did have words we’re pretty sure this would be her motto, “Don’t worry! I don’t need to be fixed. I will learn how you do things, if you learn how I do things.”She and her parents have been on one heck of journey so far filled with valleys and peaks with many more to come. Sidelle makes her family laugh, challenges them, makes them proud and best of all makes them complete.”
PHOTOGRAPHY DONATED BY DERKSEN PHOTOGRAPHY
Lyla :: Premature birth
Meet Lyla! Lyla is such a love and gives amazing hugs! During her session Lyla found her way to her photographers lap several times to just snuggle up and enjoy the sights, sounds and vibe of the park.
Lyla was born at 23 weeks gestation weighing 1 pound and 3 ounces. The odds were stacked against her, but her family quickly learned that she would be quite the fighter. Lyla was determined and worked very hard and at age 6 began walking independently. She is nonverbal but can communicate quite effectively with her facial expressions. She is fed trough a surgically placed Mickey button, but in the warm summer months she enjoys a sippy cup of iced water. Lyla is such an amazing little lady and her loved ones are beyond grateful for her.
Please join Sweet Nectar Society and cheer on Lyla! We love you sweet girl!
PHOTOGRAPHY DONATED BY BRITTANY WILBUR
Jeremiah :: brain damage
Jeremiah was full of smiles today during his Sweet Session! He loves his momma and he LOVES to be told he is “SO handsome!!!!”
Jeremiah entered this world in the most uncertain way; his mom had suffered serious illness while she was pregnant and her body rejected the pregnancy at 30 weeks. She developed cardiomyopathy and required immediate heart surgery. Jeremiah was not breathing at birth and it took a team of doctors over two hours to revive him. Jeremiah was not expected to survive but he fought and is now three years old. Due to an extended lack of oxygen, Jeremiah suffered extensive brain damage and experiences seizures. He is able to communicate in his own way by singing sweet coo’s and facial expressions. He can eat pureed foods by mouth but is primarily fed through his g-tube. Jeremiah is unable to sit or walk and has developmental delays.
Jeremiah is so loved by his family. He is a sweet cuddle and so strong. Please join Sweet Nectar Society in sending Jeremiah some extra love!
PHOTOGRAPHY BY BRITTANY WILBUR
Karishma :: oxygen deprivation at birth
Karishma’s favorite thing in the world is being held and snuggled. Karishma suffered from oxygen deprivation at birth which caused profound brain injury resulting in her being a quadriplegic. Karishma had surgery to correct her esophageal atresia, a congenital birth defect that prevents the esophagus from connecting normally to the stomach. Karishma now has a feeding tube. She also had surgery to repair a hole in her heart which did not close normally after birth.
Karishma is loved and adored by her family. Please join Sweet Nectar Society in encouraging this sweet family!
Photography donated by Mckenzye Anker