Live Sweet + Love All

Emily :: Goldenhar, hydrocephalus

Meet Emily!

Emily is the sweetest little girl who loves dogs- when she arrived to her session she was greeted by Buddy the dog- during her entire session she searched for where Buddy ran off to. Finally, at the end of her session Buddy came to give some good bye loves to Emily and she lit up with excitement- so much so, that she did not want to leave- despite the 100 degree heat. Emily’s parents learned at 5 months pregnant that there were some complications and that their baby had hydrocephalus. They were preparing for the worst- the possibility their child may not walk, eat independently or communicate. Immediately after Emily was born they knew there was something else going on. At 1 week old, Emily had brain surgery to have a shunt placed. After unsuccessful attempts of trying to get Emily to eat well, she had a g-tube placed. Finally, at 2 months she was able to go home from Valley Children’s. When Emily was 3 months old her family learned that she had Goldenhar. Emily has undergone several surgeries and is preparing for several more- including one to remove a rib to be used to reconstruct her jaw. She will also require surgeries to remove dermoids in her eyes which are effecting her vision. She’s a really smart and lovable sweetie. She has started school and she loves to be around people. She has a smile that can melt any heart. Emily loves asking questions, going to the store and saying “Hi” to everyone!

Emily – Goldenhar, Hydrocephalus

Quorra :: Down syndrome

Meet Quorra!

“Quorra is full of love. She is non-verbal 5 years who is funny, caring, and willing to help others. Before she was born we were told of her diagnosis but that did not stop us to getting her here with no limitations. We love her no matter her limitations. At 15 months is started to walk and that was a great sign that she can do anything she sets her mind to and that is for sure. There are a few things she struggles with like running and jumping but in time we know she can and will accomplish these things. In school, Quorra is meeting her goals for her IEP. We are currently working on her language and that is coming along. She uses the PEC system and tries her hardest to verbalize some words. She loves to play outside on her slide, the porch swing and loves Disneyland. Especially the princesses. She is our princess. No words can express how much patience, understanding and LOVE she has brought to our family.”

Jason :: Fragile X Syndrome, Autism

Meet Jason!

Jason is a happy, rambunctious boy. He is non-verbal, uses the PEC system or minimal words to communicate. He struggles in large groups but is so loving. He is making strides in school and is meeting goals that were set out for him. He is a great big brother to his baby sister and loves his mom and dad. Jason has Fragile X Syndrome and Autism and the best smile you will ever see!

Jason – Fragile X Syndrome, Autism

Lilah :: Trisomy 18

Meet Lilah. Sweet Lilah came into this world adored by her family. Even at her young she age is changing lives and moving hearts. She has Trisomy 18 and her loved ones are soaking in every minute and milestone with this princess! Lilah was an angel for her session and loved all the snuggling she received by her loved ones.

Learn more about about Trisomy 18 HERE.

Lilah – Trisomy 18

Anthony :: Autism

Meet Anthony!

Anthony is always sporting his amazing smile. He has an optimistic attitude and does his very best to bring happiness to the world. It is inspiring to see him grow. He was diagnosed at age 5 with autism after his K teacher recommended an evaluation. His family is grateful for the countless teachers, aides and friends who continue to route for Anthony everyday. Anthony shared his amazing smile with his photographer and we love sharing it with you!

Anthony – Autism

Patient Spotlight :: Leslie

Patient Spotlight sessions are taken of children who are currently staying at the hospital. Our photographers get to meet these amazing sweeties in their rooms, and in and around the hospital grounds. We love getting to bring in clothing and accessories and see the nurses and doctor’s reactions to seeing them all fixed up and showing a bit more of the life inside of the hospital walls.

Patient Spotlight :: Tyler

Patient Spotlight :: Francisco

Patient Spotlight :: Adel

Patient Spotlight :: Brandon

Davy Jean :: 22q11.2 deletion syndrome

Meet Davy!!

Davy Jean was born with a rare, yet “not so rare” highly misunderstood and underdiagnosed chromosomal deletion called “22q112 deletion syndrome” that occurs in only 1 in 4,000 births. It’s a tiny glitch in the way her DNA lines up when she was being created that ultimately causes more than 200 known abnormalities and issues. It presents itself differently in every patient, which is why it is so hard to diagnose without genetic testing. Davy’s has presented itself in heart conditions, palate development and hearing problems.

Jaelyn :: Medulloblastoma

Meet Jealyn!
“Our lives changed forever on July 25th of 2017! My daughter came home sick from school that day with a headache and vomiting. This headache, stomach ache and vomiting had started about 6 months prior to the 25th but this day I noticed something just wasn’t right. She was delirius and didnt know her name or what day it was so we rushed her to our local emergency room where the did a neuro exam and failed so within 15 min she was rushed to Valley Childrens.

That night our lives changed forever. We were told she needed an MRI to see what was going on with her brain. An MRI that was supposed to last 2 hours only lasted only 10 minutes because it was obvious that she has a very large mass right behind her brain! We were told the mass was a bit bigger than a golf ball. Her dad and I completely lost it! A neurosurgeon was contacted that same night and told us she needed emergency surgery the next morning to try and get this tumor out.

So next morning she went right into surgery and the surgery lasted about 6 hours. Jaelyn did well and there were no complications. We received the news that Jaelyns tumor was completely recected! But were were still scared and didn’t know if this tumor was cancerous or not and were told it was being shipped off to be biopsied and would take a week.

Well… 3 days later the results came back and yes indeed it was cancer- a very, very aggressive tye of cancer stage 4, medulloblastoma. We were numb! Our hearts shattered and all we could think about was how much time we really had. All we had to rely on was hope and faith!

A few days after surgery she developed posterior fossa syndrome which made her loose the abitlity to walk, talk, and was basically a vegetable. Although she was still able to move her legs and she kicked and screamed 24/7… It was a nightmare. Not knowing what she was feeling or if she needed something. but after about 2 months she started to open her eyes. The kicking and screaming became less and 5 months later she said her first words.

My poor baby has gone through hell and back but shes been so stong and brave. She was transferred to UCSF Children’s Hospital in San Fransisco to under go radiation for 6 weeks and also intensive physical therapy for 4 weeks. A week before Thanksgiving she got the opportunity to go home! Although after 3 days at home she had to be admitted to start her chemo treatments. 6 months of chemo. It was tough but she was tougher!

She never once let this illness get her down! She has such an amazing personality! Shes so sweet and so goofy! She loves to joke around and has the most contagious smile! She’s been so strong through her fight and she’s coming out on top! On Tuesday, April 24th Jaelyn had her last chemo treatment! And I couldn’t be more proud of her! She’s one amazing kid! She’s my hero!

Her favorite activies are listening to music (Bruno Mars is her fav!) arts and crafts, playing with her squishies and making slime!” her momma bear Amber