Live Sweet + Love All

Jaleena : Down Syndrome

Jaleena’s family didn’t find out that there were indicators of Down Syndrome until she was two days old and didn’t get a final diagnosis until she was two weeks. At that point they were sent to Children’s Hospital Central California where doctors found a huge hole in Jaleena’s heart. At just 3 months old Jaleena underwent open heart surgery. She recovered wonderfully and now just goes yearly for a check up on her heart. Jaleena has been a huge blessing to her family sharing her warm personality with everyone she meets. Her family calls her their hero, let’s show Jaleena that we all feel the same way by commenting, liking, or sharing her smile!

PHOTOGRAPHY BY CARRIE ANNE MIRANDA

Norah : Dandy Walker Variant, Spina Bifida Occulta, Congenital Heart Defect

A message from Norah’s mom:

Five months after our second miscarriage, my husband and I received the best and most devastating news of our lives. We were four months pregnant, however there was something wrong with our baby’s brain. We were sent to a geneticist and at that ultrasound we found out we were having a girl and she had dandy-walker, which meant she was missing her cerebellum and that she also had a large cyst at the base of her brain. Norah was also diagnosed with a heart defect, one of the chambers of her heart was larger than the other and it faced forward instead of to the left.

We were given the option to terminate the pregnancy because many children born with this condition are severely manually and physically handicapped if the child survives. We decided since we had been trying to get pregnant and after loosing 2 previous pregnancies that our baby deserved a fighting chance. As my pregnancy progressed her diagnosis began looking better- more of her brain was developing and her cyst was getting smaller and there were no signs of hydrocephalus.

We were prepared for Norah’s birth, so we thought. We knew what to expect with Dandy Walker and with her heart. At 32 weeks gestation, we were diagnosed with intrauterine growth restriction- she wasn’t gaining weight or growing at all. The decision was made to induce early because it was more safe for her to be out getting medical attention than stay inside. Six hours before induction I went into labor which was 15 hours of a medically hard, distressed labor before meeting “our light” Norah.

Norah was immediately taken to CHCC to begin her journey in the NICU. He official diagnoses are Dandy Walker Variant, Spina Bifida Occulta, Congenital Heart Defect.

Norah is currently doing very well. She had spinal cord surgery in July to release the tethering due to her spina bifida and she is doing much better with that now! Norah has recently now developed a voiding dysfunction due to her spinal cord issues. We are also now working through a sensory processing delay.

Through this all Norah remains our happy little light.

Jaelyn : Shaken Baby Syndrome

Jaelyn has Shaken Baby Syndrome (SBS) which was caused by extreme physical abuse by her birth parents. Often times SBS is fatal or causes brain damage resulting in lifelong disabilities. Jaelyn was first seen in the emergency room at 2 weeks of age with four broken ribs. She was sent home only to return less than two months later with traumatic brain injury. Jaelyn was placed in foster care with an amazing family who made the loving choice to make Jaelyn their own.

Jaelyn was not expected to make it out of her three month stay in the hospital and if she did, she was only given a 5% chance of living in a vegetative state. This miracle child has surpassed all odds and is crawling and able to pull herself up to stand. Jaelyn had cortical vision impairment but amazingly is now able to track things and make eye contact.

Jaelyn is unable to talk or walk but that does not stop her from being Jaelyn. She is a happy, loving child with a heart of gold and is adored by her parents and 3 other adopted siblings.

photography by Brittany Wilbur

Katelyn : Neonatal (GBS) Meningitis

Katelyn was born a healthy and happy baby girl in April 2013. At a month old Katelyn’s behavior changed drastically and she cried uncontrollably and her mother took her to the doctor. Katelyn’s blood pressure was all over the place, she was no longer crying, and her eyes blankly starred off. Katelyn was immediately airlifted to Children’s Hospital Central California and she was diagnosed with GBS meningitis. Her brain was badly damaged and she had endured multiple strokes. After a month of being in the hospital this little sweetie was sent home on hospice care.

For more information on GBS meningitis please visit the following sources:
Neonatal Meningitis

Marveya : Metastic Sarcoma and Adreno Cortical Carcinoma

Marveya was diagnosed with Metastic Sarcoma and Adreno Cortical Carcinoma on July 26, 2013. Only 1 in 4 patients with this aggressive disease survive. She set out on a journey to fight her cancer, accepting every obstacle with a positive outlook and determination to win the battle. Even though the pain caused her to use a walker or wheelchair she continued to bravely push on each day.
With very heavy hearts we share Marveya’s story in memory of her sweet spirit, kind heart, and an outlook on life that was wise beyond her years. Please take a moment to show love and support to her loved ones.

Photography by Brittany Wilbur

Patricio :: Stage 4 Neuroblastoma

One year old Patricio (Patrick) was diagnosed with stage 4 Neuroblastoma back in September 2013. Since then he has undergone countless procedures to battle his diagnosis. Through it all Patrick continues to be a happy little guy and his family lovingly supports him each day. Patrick’s doctors have a plan for his treatment and high hopes for his prognosis. He is a very brave boy and though he has had many hospital stays and has multiple limitations due to his weakened immune system, yet he still manages to maintain the carefree attitude of a happy toddler boy.

Photography by: Brittany Wilbur

Sylvia :: Lupus

11 year old Sylvia was diagnosed with Lupus Sle and Nephritis and is currently undergoing chemo therapy to put it into remission. Sylvia is a remarkable young lady who has taken this diagnosis by the horns and created ways to help others in her situation. Sylvia has created a support group for other children with Lupus @lupuskids on Instagram. She has also started Protecting Our Butterflies, where she collects sunblock to give to there children fighting Lupus who have sensitivity to the sun.
Sylvia has personality that goes on for days and she had us all in tears with her jokes- one right after another. We are blown away by this girls enthusiasm for life and are honored to share Sylvia with SNS.

Photography by: Brittany Wilbur

Charis : Down Syndrome, Strabismus

“Charis Soleil” means “gift of light”, a name purposefully chosen for this sweet girl. After 7 years of trying to conceive and finally giving up on the idea of having a child the Crisco family received the best news, they were expecting a baby! Charis was born on February 12, 2012 and diagnosed with Down Syndrome a day later. Charis did not have many of the typical major health issues that children with down syndrome are born with, such as heart or gut defects. Charis began early intervention and physical and speech therapy very young age. Charis was diagnosed with strabismus at 6 months, which means her eyes cross, she has been doing vision therapy to strengthen her eyes in hopes of avoiding surgery. Charis also has several food allergies to soy, dairy, wheat, and citrus, which makes selecting meals a challenge. Despite any struggles, Charis’s parents believe she is the best thing that ever happened to their family.

For more information about down syndrome please visit DSACC.

photography by Erin Pasillas

Ava :: Mitochondrial Dysautonomia and total Gastroparesis

After being sick with fevers for 10 months doctors discovered a mass on Ava’s heart- benign rhabdomyoma. This mass had begun to separate from her heart and with her next growth-spert doctors said it would have pulled from her heart and she would have died instantly.

Ava was recently diagnosed with Mitochondrial Dysautonomia. Mitochondrial disease consists of many symptoms that do not necessarily connect, such as, heat intolerance, erratic blood pressure, dizziness, nausea, intermittent gut dysfunction, and more. Dysautonomia describes an inability of the autonomic nervous system to regulate “typical” body functions, and is the cause of many of these troubling and confusing symptoms.

Ava’s currently at Children’s Hospital Central California adjusting to her recent J-tube surgery resulting from total gastroparesis, the muscles in her stomach stopped functioning. Before she can come home Ava must find a formula that works for her body and she her vitals must stabilize.
Having an actual diagnosis is a huge relief for this sweetie’s family- they have been fighting for the cause of Ava’s symptoms and searching for answers. We wish Ava the very best and pray for comfort during this time of adjustment.

Please give this sweetie some love by liking, sharing and sending good vibes her way- she is an absolute doll with such a gentle spirit!
(for more information please visit:http://www.mitoaction.org/)

Cash :: Pineoblastoma

Sweet Cash will be remembered as a superhero to many, a friend, a brother, and a son. Cash touched many lives during his 5 years he spent on this earth; his personality stole our hearts, his smile brightened our day, his strength inspired us. Cash’s battle began with Pineoblastoma at the tender age of 4, when this rambunctious boy began getting headaches and had uncontrollable vomiting. He was taken to the hospital where his family was told he had a virus and sent home- this did not settle with his mom’s Super Mommy Instincts and she took him to Children’s Hospital for further testing. An MRI showed a brain tumor and a parents worst fear settled in- CANCER.

Cash never complained about his situation, he took each treatment, test, and surgery as it came, and his braveness and tireless strength helped his lift his families spirits during this time.

After a long hard fight Cash’s cancer took over and Cash Shank passed away on February 6, 2014. The Shank family and Cash will always be in our hearts.

Pineoblastoma is a rare malignant brain tumor which forms from the pineal gland (near the center of the head and brain). This tumor grows very quickly and is extremely invasive. For more information on Pineoblastoma or Childhood brain tumors please visit www.pineoblastoma.com.

Peyton :: hydrocephalus, cerebral palsy, seizures, and global delays

Peyton’s journey began at 23 weeks, he came into this world weighing 15oz. and is the only surviving triplet. He suffered from fluid on the brain at birth causing extensive brain trauma. Peyton struggles include hydrocephalus, cerebral palsy, seizures, and global delays, due to the pressure. Peyton has such determination and has worked hard to stand, crawl, and interact. Despite the difficulties he endures, this little man knows no boundaries. Peyton was recently admitted to Children’s Hospital Central California to the PICU for a very serious lung infection as well as an unknown infection that is being treated with a broad spectrum antibiotic. He is in critical but stable condition at this time and is heavily sedated to ensure his comfort and healing. This sweet little man is hooked up to many different machines that are monitoring his sedation level, brain activity, breathing, eating, fluids, etc. Peyton is being closely watched by the amazing PICU doctors and nurses who recently shared with his family they are seeing a slight improvement in the infection in his right lung. Peyton’s parents are trying to stay positive and have faith that their strong little man will continue to fight this battle. Along with Peyton, the Parmer family have two other children. Their other son Jamie is currently undergoing treatment at CHCC for acute lymphoblastic leukemia and is also a Sweet Nectar Society Sweetie. This family is enduring more than most face in a lifetime and they are in need of your love and support now more than ever. Please join Sweet Nectar Society in encouraging this family by leaving them messages, comments or liking Peyton’s story. If you would like to give to this family, please contact Sweet Nectar Society for more info.

“He has an incredible will and spirit despite his odds. He has made some improvements, but concerning setbacks as well. Doctors believe that he probably will be intubated for some time, but would like to get him off his current vent soon. Peyton is a fighter. I hold his hand almost all day long and he knows I’m there.” Rebecca Parmer (mom)

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*hospital photos curtsey of the Parmer family

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photography by Brittany Wilbur

Rosie : Clear-Cell Sarcoma

Rosie is such a strong young woman who has endured so much in her life. At age 17 Rosie was diagnosed with clear-cell sarcoma (a rare form of cancer that is seen in much older woman, never teenagers). Rosie and her family did not settle when doctors told them there was nothing they could do for her. In the past year she has endured aggressive treatments; chemo therapy, a full hysterectomy at the age of 17, and multiple surgeries. As of today her diagnosis stands at clear cell carcinoma of the cervix (stage 4 cervical cancer) that has spread to her lungs. Rosie has completed 12 rounds of chemotherapy and is now going through 30 rounds of radiation, which is done every day. Rosie will be getting a full scan in May and her family is praying to get good news. An additional treatment plan will be determined if scans come back showing little or no improvement.