Mariana :: arthrogryposis renal dysfunction cholestasis syndrome

Meet Mariana. Mariana was a precious little girl whose every moments will forever be treasured by her family. Mariana was diagnosed with ARC Syndrome (arthrogryposis-renal dysfunction-cholestasis syndrome) an extremely rare and fatal autosomal recessive multisystem disorder caused by mutations in the VPS33B or VIPAR gene. Mariana’s family knows this diagnosis all too well because two of her siblings had this same genetic disorder and passed away from it several years ago. There is no known treatment for ARC Syndrome. Mariana was kept comfortable by her amazing team of doctors and nurses at Valley Children’s.
Please join Sweet Nectar Society in sending Mariana’s loved ones continued prayers and words of comfort.

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Photography donated by Carrie Anne Miranda
Sara Jacobo

Hi my name is Sara and my Son Andres has arthrogryposis renal dysfunction cholestasis syndrome. I understand that your family has gone through a lot and I am so sorry for your loss..The Doctors we are currently working with has little or no information for us.. If you have information or names of Doctors that can help i would really appreciate it. Thank you so much

Moses :: Thanatophoric dysplasia

Meet Moses!
Moses was immediately placed on hospice care after he was born. Each and every moment spent with this little guy was a gift that will be treasured forever. Moses was born with a genetic condition called Thanatophoric dysplasia.
Thanatophoric dysplasia is a terminal and severe skeletal disorder characterized by extremely short limbs and folds of extra (redundant) skin on the arms and legs. Other features of this condition include a narrow chest, short ribs, underdeveloped lungs, and an enlarged head with a large forehead and prominent, wide-spaced eyes.
We will forever remember this sweet little guy.
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FERNANDO :: congenital heart disease

Meet Fernando! Fernando is a sweet little guy who is super at overcoming obstacles and being brave. He loves to run and be outdoors. Bikes, trucks, motorcycles are some of his favorite things.

Fernando was born with congenital heart disease. He has several conditions effecting his heart: dextrocardia, heterotaxy syndrome, chromosomal deletion, TOF, transposition of the great arteries, septical defect, atrial defect- to name a few.

Despite all Fernando has been through, he has no limitations and enjoys everything the world has to offer him!

Please join Sweet Nectar Society in encouraging this little warrior to continue to smile, laugh and find joy everyday.

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Thank you Sunderland Photography for donating Fernando his Sweet Session.

Kylee :: 15q24 micro deletion syndrome

Meet Kylee!
Kylee is the sweetest and happiest little girl! She loves the beach, bubbles, Peppa Pig and she is a huge fan of her sister! Kylee loves animals, especially horses and is a proud horseback rider at “The Heart Of The Horse Therapy Ranch”. Kylee attends physical, occupational, and speech therapy, along with visits to other specialists on a regular basis. She is currently learning to walk, talk and is becoming a social butterfly!
When Kylee was born she was not thriving, after multiple tests and scans she was diagnosed with a vary rare genetic disorder. Kylee is only the 19th person in the world to be diagnosed with 15q24 micro deletion syndrome.
Kylee has had 10 different surgeries and will continue to have more in the future. She was born with several birth defects including her brain, spine, heart, lungs, intestines, and other vital organs. She was born with a terrible defect in her diagrams that allows her stomach and intestines to protrude into her chest this has caused her heart to live on the right side of her chest and one lung not to fully developed.

Please join Sweet Nectar Society in encouraging our Sweetie!

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Thank you Derksen Photography for donating this Sweet Session and Cavelle Kids of Clovis for providing this sweet outfit for Kylee!

 

Xavier :: Heart Defect, Brain Damage due to lack of oxygen

Meet Xavier! Xavier is a happy go lucky, smiley little guy who brings a lot of joy to his family. Xavier was born with a heart defect called corrected transposition of the great blood vessels. He had his first open heart surgery at 6 months to put in a PA band, a ruber band to stop his heart from leaking. A year later he had another open heart surgery to put in a pace maker, this surgery lasted over 15 hours. While recovering in the ICU he stopped breathing for 6 minutes, at this time he was in full code blue but doctors were able to revive him. Xavier remained in ICU for about 2 months followed by another 3 months in the rehab unit where Xavier leaned to walk and talk again.
Xavier was able to go home with an IV. During his appointment to get the IV removed Xavier stopped breathing for 1 minute and he did not get blood or oxygen to his brain. Xavier’s family have been told that he will never talk, walk or be the same again. It is unknown if he can see. His family is thankful he is able to hear and communicate with sounds.
Please join Sweet Nectar Society in giving Xavier some extra love today! Keep on keeping on little guy! You are so loved!
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Huge thank you to one of our newest Sweet Photographer, N. Godinez Photography for providing Xavier and his momma a beautiful session! We are excited that you have joined our team!

FOREVER IN OUR HEARTS :: ISMAEL

Sweet Ismael will forever be in our hearts.

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photography donated by Jess Cadena

ROMAN :: TRISOMY 21

Meet Roman! Roman is an energetic, enthusiastic, loving little boy with the most amazing smile!!!! Roman was born with Trisomy 21, but he does not let anything slow him down- seriously, this kid is fast! He took us for a run during his session and was sure to slip in some belly laughs and smiles in between his laps! It was a super quick, super fun session!
Please join Sweet Nectar Society and cheer on Roman! Roman_2016__32 Roman_2016__53 Roman_2016__45 Roman_2016__41 Roman_2016__28 Roman_2016__24 Roman_2016__17 IMG_0444

PHOTOGRAPHY DONATED BY BRITTANY WILBUR

LEVI :: DOWN SYNDROME

Meet Levi! Levi is a very happy boy with a wonderful personality and an adorable smile! He loves munching on tasty treats and trying new foods.
Levi’s family was told he had down syndrome after he was born, this diagnosis changed their world. Levi had open heart surgery when he was 3 months old. He is now doing well and every day is an adventure!
Please join Sweet Nectar Society in waving hi to Sweetie Levi!
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A sweet thanks to Stephen Bryant for providing this Sweet Session to Levi!

ADAM :: DOWN SYNDROME

Meet Adam! Adam is quite the charmer and he knows it- during his session he was full of smiles and plenty of giggles. Adam is a young man with Down Syndrome, however, DS does not define him. Adam is independent and very active. He has participated in special olympics in the throwing and running events.
We will continue to cheer on Adam in all that he sets his mind to! We believe you can do it Adam!!!!

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PHOTOGRAPHY DONATED BY BRITTANY WILBUR

MACY :: DOWN SYNDROME, CONGENITAL HEART DEFECT

Meet Macy! Macy was born with down syndrome and congenital heart defect. Soon after birth, Macy had open heart surgery to repair the defect and has been thriving ever since. She loves riding the bus and going to school. Her family couldn’t be more in love and proud of Macy. They say she gave them the life they never knew they wanted and wouldn’t trade it for the world!
Please join us in cheering on the sweet girl! We hope you have a wonderful day Macy! 
 

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A very sweet thank you to Cori with Derksen Photography and Cavelle Kids for hooking Macy up with this Sweet Session and outfit!

Jazlynn :: Ewings sarcoma

Meet Jazlynn! Jazlynn is a stunningly beautiful little girl with a bright smile and shinning personality. Jazzy was diagnosed with Ewings Sarcoma and underwent 17 rounds of chemotherapy.
Jazzi finished treatment and is now CANCER FREE!
We send our continued love and support to Sweet Jazzi!Jaz_2016__105 Jaz_2016__76 Jaz_2016__65 Jaz_2016__53 Jaz_2016__50 Jaz_2016__43 Jaz_2016__20 Jaz_2016__14 Jaz_1

PHOTOGRAPHY DONATED BY BRITTANY WILBUR

MATIAS & MARIO :: NON-VERBAL, CEREBRAL PALSY, DELAYED DEVELOPMENT

Matias
Matias and his twin brother Mario were born at 28 weeks. Matias weighed 1 pound 14 ounces at birth and required heart surgery, continuous oxygen and a colostomy bag for many months. He needed to stay connected to a monitor because he would stop breathing.
Matias is now three years old and such a sweet boy. Although he is non-verbal he is very expressive and able to communicate in his own way. He is starting to stand and walk with assistance. He can crawl around and continues to get stronger by attending physical therapy on a regular basis.
Matias is an absolute love! After his session was over Matias made it known he wanted get in my car and come home with me. Since I couldn’t fit another car seat, I settled for a big hug and managed to snap a picture with my two new buddies! 

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Mario
Mario and his twin brother Matias we born at 28 weeks. Mario weighed 1 pound 9 ounces at birth and required heart and eye surgery. Mario needed to stay connected to oxygen for seven months before his lungs were strong enough for him to breath on his own.
Mario is now three years old and able to sit on his own and is starting to scoot around. He is still gaining strength to support himself and continues to attend physical therapy on a regular basis. Mario does not talk but is very expressive.
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Please join Sweet Nectar Society in cheering on these sweet brothers! Big hugs to Mario and Matias!

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PHOTOGRAPHY DONATED BY BRITTANY WILBUR