Abriah :: Undiagnosed
Abriah is a beautiful light in her families life. She was born healthy and began developing normally until around the age of one. He family became concerned when she wasn’t meeting milestones like walking. Their first thought was maybe she was a late bloomer, then around 18 months they thought that something could be wrong with her legs. Her mom then requested a second opinion from a specialist. It was around this time Abriah started loosing abilities she had acquired like: self feeding her favorite baby snacks, holding things, she knew how to crawl but she slowly forgot how to get into crawling position, she no longer knew how to sit up, lost trunk support, then head support, she smiled less often & lost the ability to play with her toys.
As time went on she continued to regress. MRI’s show the deterioration of her brain slowly becoming worse and worse with time. She’s missing the white matter that makes up part of our brain. Due to her regression her feedings became difficult. She lost the ability to chew and swallow so she was very thin- weighing 20lbs at 3 years old. She began to aspirate liquids into her lungs so a gtube was placed to help her feedings and calorie intake. She now only feeds by gtube and no longer by mouth.
Most recently Abriah has developed problems breathing and it’s made her chest bell shaped; she is currently waiting to see a pulmonary specialist. She can move her legs and arms but has she no control over the movements. She’s considered blind because she can not processed by her brain- she will only react to bright lights once in a while.
Test with diseases with similar symptoms have been run and they all show negative. Her test have been sent to the university of Washington were a group of geneticist will be studying her DNA and going over her results. As of today she has baffled teams of Doctor’s and geneticists. Her family is hoping for a diagnosis, although they know there is a chance she could remain an undiagnosed child. Abriah’s family continues to have hope and enjoy every second with her.
Photography donated by Mckenzie Anker
Julietta :: Pre-B Cell Acute Lymphoblastic Leukemia
Juliette had Pre-B Cell Acute Lymphoblastic Leukemia. She was a beautiful little warrior who loved to dance and look through books.
She was surrounded by family that loves her and a team of doctors and nurses who did everything they can to help Julietta beat cancer but her sweet little body lost the battle. The images taken during Julietta’s session will forever tell her story of being a precious and peaceful Sweetie who left a never ending impression on this world.
Angel :: Premature Birth, Chronic lung, immune deficiency, and delay
Meet Angel! Angel was born premature weighing only 3 pounds at birth. He spent several months the NICU before he was able to go home. At 3 months old Angel started experiencing more medical issues. Angel’s biggest battle has been his lungs. He was also diagnosed with apnea that called for Angel to be hooked up to and apnea machine at all times, required medication and was given constant oxygen. Angel was diagnosed with severe Gerd and after several hospital admissions the decision was made for Angel to have surgery and get a Gtube and Fundoplication. Angel also struggled with Chronic lung, immune deficiency, and delay.
This sweet boy has demonstrated so much strength and courage, has continued to smile and has never given up.
This Sweet boy showed up in his scrubs and personalized doctors coat. He has had so many amazing doctors working with him, we think he could do an amazing job following in their footsteps!
Photography donated byDerksen Photography
Phoebe :: Down Syndrome
Phoebe’s mom shared a sweet depiction of her Sweetie, we adore this girls spunk! “Phoebe is amazing! She is incredibly motivated and determined. If she wants something there is not much that will stop her from getting it, she is a dream chaser!
I found out when I was pregnant that Phoebe tested positive for Trisomy 21, but her markers were so insignificant on the ultrasounds that I asked for a blood test in the hospital when she was born. Even hours after she was born she was trying to lift her head up and was nursing. Phoebe has maintained meeting her developmental milestones within 6 months of her chronological age, which further illustrates her internal drive to succeed. As she has grown up over the last two years she has developed an amazing sense of humor and a wild yet stubborn personality! I feel blessed in knowing that NO one will take advantage of her as she can advocate for herself so well. I am proud that she is independent and vocal about what she wants! Phoebe is also eager to please and LOVES to be praised. In fact, she reminds her teachers that she did something well by clapping and starting to cheer for herself!
Phoebe has brought joy to each and every person that she has encountered and I am exceptionally proud of everything she has accomplished in such a short period of time.”
Photography donated by Alexandria Smith
Noah :: Down Syndrome
Meet Noah! Noah has an amazingly kind and sweet spirit that touches the hearts of all he meets. Noah was diagnosed with down syndrome after he was born. He spent weeks in the hospital receiving treatment to repair a hole in his heart. Noah received a mickey feeding tube because he was having difficulty eating due to low muscle tone. There was a period of time where Noah had additional health scared and whole process was just horrifying to his family. With God’s grace his family made it through the darkest of times and and are now so very happy that Noah is thriving! He is working very hard on his speech and has began saying many more words this year.
Please join us in cheering on Noah! We wish you the best in all you do!
Photography donated by Victor Gonzalez
Marquez Family :: Huntington’s Disease
A rare diagnosis of Huntington’s disease has been given to this father and two of his sons. Huntington’s disease, also known as absence epileptic syndrome, is a genetic disease that causes progressive breakdown of the nerve cells in the brain. This breakdown results in mood changes, uncontrolled body movements, loss of coordination. These symptoms worsen over time and ultimately result in a persons inability to talk and walk independently. There is no effective treatment for the progression of this fatal disease.
The Marquez family continues to stay strong and take advantage of each an every day together. Please join Sweet Nectar Society in encouraging this family.
Photography donated by Mckenzie Anker
Teagan :: Autism | Kylee :: Down Syndrome, Mitral valve defect
Meet Teagan and Kylee! This photo captures the beautiful love these twin sisters have for one another.
Teagan was born with Down Syndrome and Mitral Valve Defect. Teagan had an AV Canal repair at 10 weeks old but the surgery was difficult and the mitral valve was still leaking. In January 2011, Teagan, at 13 years old, had her “repaired” mitral valve replaced with a bovine valve. She is much stronger and vibrant since the second surgery. She loves swimming, basketball, school, board games, her best buddy, Aaron, and her very special Daddy that she calls “My boy, Mike”.
Kylee was recently diagnosed with Autism. This diagnoses has not stopped Kylee from achieving great goals. She is diligent in her studies and is currently going to school at Fresno State.
Photography donated by Carina Dunmore
Sophie :: Autism
Meet Sophie! Sophia is a fun, loving, and sweet little girl. She loves to smile, dance, and run around. Sophie was diagnosed with Autism and attends speech twice a week and ABA daily. She works so incredibly hard in therapy. She is eager to learn and always tries her best.
Sophie’s mom contacted Sweet Nectar after a teacher gave her our information. She shared with us that she felt “capturing pictures of a child that can’t understand what we are asking and doesn’t have the best eye contact, is a struggle.” Our photographer Carina Dunmore was able to capture Sophie and her joyful spirit during her session. We are so thankful to have been giving this opportunity to photograph this Sweetie!
Photography by Carina Dunmore
Sylus :: Spina Bifida, Hydrocephalus
Meet Sylus. This handsome little guy is has such a fun personality. Sylus was born with Spina Bifida and Hydrocephalus. He attends physical therapy several times a week to help him build strength so he will gain the ability to sit and walk on his own. He is making progress everyday. Sylus has also had bladder, bowel and lower extremity issues but it does not stop this Sweetie from smiling!
Photography by Victor Gonzalez
Sophia :: acute lymphoblastic leukemia
Meet Sophia! Sophia is a precious little girl with an amazing smile and the sweetest personality. Sophia was diagnosed with acute lymphoblastic leukemia and treated by an amazing team at Valley Children’s. Cancer did not rob Sophia’s smiles and bubbly personality. She continues to be a light in her families lives and a hero in the hearts of many.
Please join Sweet Nectar Society in encouraging Sophia!
Photography donated by Natalie Godinez
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.
Photography donated by Carrie Anne Miranda
Moses :: Thanatophoric dysplasia
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.