FOCUS :: DOWN SYNDROME
3/21 is World Down Syndrome Day. A day to celebrate our friends with Down syndrome and spread the word that these individuals are not defined by their diagnosis!
What you should know about Down syndrome…
Down syndrome isn’t common. 1 in every 700 live births results in a child born with Down syndrome. Which means that someone with Down syndrome is incredibly special! Down syndrome is a third full or partial copy of the 21st chromosome in a humans DNA. Chromosomes are the tiny pieces of code in our body that tell us how we look, how we grow, and how our brain works. Which is why someone with Down syndrome may look and learn differently than you. More than anything else, you should know that someone with Down syndrome is more like you than they are different… they love sports, singing, dancing, music, reading, art, playing with friends, and most of all… love being included, accepted and appreciated for who they are as an individual. They are a person first; they are more than their diagnosis.
-DSACC, Down Syndrome Association of Central California
PHOTOGRAPHY DONATED BY CARRIE ANNE MIRANDA & BRITTANY WILBUR
Jeffrey :: Autism, seizure disorder, Tourette’s syndrome
Meet Jeffrey! Jeffery has a very kind and gentle spirit. He is the helper of the family and such a loving boy. Jeffrey was welcomed into an amazing family who are dedicated to their passion for education and advocacy of special needs and transracial adoption (He is our other Sweetie Lila’s big brother).
Jeffrey has been diagnosed with mild/moderate autism. He has a seizure disorder and takes medication to help keep his seizures under control. Jeffrey also has Tourette’s syndrome. Tourette’s syndrome involves uncontrollable repetitive movements or unwanted sounds (also known as tics), such as repeatedly blinking the eyes, shrugging shoulders, or blurting out offensive words.
Jeffrey was a joy to photograph, he lead Carrie Anne around the park and showed her the art of tree climbing.
PHOTOGRAPHY DONATED BY CARRIE ANNE MIRANDA
Lila :: cerebral palsy and chromosome deletion 10q
Meet Lila! Lila rocked her Sweet Nectar session with smiles and tons of cuteness! Lila was welcomed into an amazing family who are dedicated to their passion for education and advocacy of special needs and transracial adoption.
Lila has cerebral palsy and chromosome deletion 10q. This genetic syndrome can cause developmental delay, intellectual disability, behavioral problems, and distinctive facial features.
Lila continues to overcome many obstacles. With the added support of ankle braces, Lila recently began walking independently! Way to go Lila, we are so proud of you!!!!!
PHOTOGRAPHY DONATED BY BRITTANY WILBUR
Xavier :: Chronic Respiratory Failure
Xavier is a sweet little guy who is adored by his two sisters and two brothers. Xavier has Chronic Respiratory Failure which requires him to have a trach and be hooked up to a ventilator to help him breath. He has been going to physical therapy and is now able to sit up! His family is so proud of him!
Please join Sweet Nectar Society in encourage Xavier and his family.
PHOTOGRAPHY DONATED BY VICKI SUNDERLAND
Desiré :: Incontinentia Pigmenti
Desiré is a very shy little girl at first, but once she gets to know you her personality will steal your heart! She is a funny, loving, wonderful little girl who always has a smile on her face.
Desiré was diagnosed with Incontinentia Pigmenti at 23 days old. Dental and eye abnormalities along with development delays and seizures are what have affected Desiré the most. Her first eye muscle surgery was at 1 year old. The second was at almost seven years old. Desiré takes medications on a daily basis to keep her seizures under control. However, she still has at least one seizure every month. Her fine motor skills and speech has improved significantly over these past couple of years.
Des was a joy to photograph and kept us smiling throughout her session.
PHOTOGRAPHY DONATED BY BRITTANY WILBUR
Kadynce :: MCAD, Mitochondrial disease, Ehlers Danlos Syndrome, seizure disorder, many food allergies
Meet Kadynce! Kadynce is an amazing girl who demonstrated true beauty in all that she does. At birth she was diagnosed with a metabolic disorder, MCAD, which prevents the body from turning certain fats into energy. She has to fight hard to stay healthy. Over the years Kadynce has had diagnosis after diagnosis, yet she continues to live each day to the fullest. Kadynce enjoys sports and being active, however, her most recent diagnosis, Ehlers Danlos Syndrome may be troublesome to her heart. She may have to give up some of the activities she loves because of EDS.
PHOTOGRAPHY BY CORY DERKSEN
Julissa :: Congenital Heart Defect
Julissa is an energetic 8 year that’s so full of life and dances to the beat of her own drum! She was born with Tetralogy of Fallot and has had two open heart surgeries. Her first open heart was at 8 weeks old and her second surgery was a week before her fourth birthday. Julissa has never let her medical issues hold her back! She was in Ballet, Folklorico and just recently took on soccer. She is the true definition of a warrior because every day she chooses to fight.
Julissa is winning the battle against CHD with every heartbeat and with every day choosing to smile and every day choosing to love. Her love for her pets and all of the people in her life is truly immeasurable. Her smile will brighten any ones day and she radiates an energy that is good for our soul. She is daddy’s little princess and mommy’s brave warrior!
PHOTOGRAPHY DONATED BY BRITTANY WILBUR
PATIENT SPOTLIGHT :: JANUARY 2017
PHOTOGRAPHY BY CARRIE ANNE MIRANDA
Sweets with Santa :: 2016
FOCUS :: SPINA BIFIDA
WHAT IS SPINA BIFIDA?
- Spina bifida means “split spine”.
- Spina bifida is a congenital defect of the spine- when the spina doesn’t form properly around part of the spinal chord.
- There are different degrees of spina bifida. mild to severe.
- Spina bifida can often cause paralysis of the lower limbs.
- Spina bifida is also know as the “snow flake illness” because no two case are the same.
- Everyday 8 babies are born with Spinal bifida.
- There are at least 177,000 people who are living with Spina bifida.
- People diagnosed with spina bifida are commonly diagnosed with Chari malformation, the spinal cord pushes agaist the brain causing headache, dizziness, leg pain, tingling in the arms, and even respiratory problems, and more.
- There is no cure for spina bifida but there are procedures that can help reduce some of the effects caused by the diagnosis.
MEET OUR SWEETIES!
“Omar loves football, especially his team the 49ers. He loves going to football games. He also enjoys dancing. His favorite vacation spot is the beach. His favorite food is tacos, steak and shrimp. He make friends very easy because he is very outgoing. Omar has 18 surgeries from shut revisions, decompression, untethereding of the spinal cord, ligament, foot, toe extinctions. He has had many painful surgries. He has overcome many obstacles. Just because you have spinal befida you can still accomplished anything you set yourself to do.” -Mom, Elisa Maldaco
“We learned at just 13 weeks pregnant that Oliver has Spina Bifida Myelomeningocele, a birth defect where the spinal cord doesn’t properly develop. Oli and I underwent fetal surgery at 21 weeks. (Oli was operated on to close the lesion on his back while I was still pregnant) and we were so incredibly blessed to stay pregnant for another 15 weeks. Oli is such a light to our family. He surprises us all the time with his progress. In many ways he is like any other 18 month old. For instance as I’m write this he is very vocal about letting me know he’s out of Cheerios! He loves to play ball and cars with his brother and peek a boo with sister. His favorite part of bedtime is picking out a stuffed animal to snuggle with. He is sweet and funny, has a laugh that will light up any room and make your heart smile. Oli has and will continue to have his share of challenges to overcome. But with each of those we are blessed to see God working in his life and through him in those around him. We are continually learning what it means to be a special needs family and it’s one of the greatest lessons we could ever be blessed with.” -Mom, Anna Lopez
“Norah is our little ray of sunshine. Although she had an amniocentesis done in utero for other genetic conditions she has, her Spina Bifida diagnosis was not discovered until birth, when her delivery team noticed her sacral dimple on her back, and an MRI on her brain and spine showed a tethered spinal cord as well as multiple syrinxes, or cysts on the spinal cord.Of the 3 types of Spina Bifida, Norah’s type, Spina Bifida Occulta tends to be the least severe form. Meaning her spinal cord was not exposed outside of her lesion, rather only exposed from her spinal column.At age 18 months, Norah had a complete regression in which her fine and gross motor skills began to be affected, and she lost the ability to urinate on her own. Norah’s spinal cord is affected at L-3, and at age 2, because she became symptomatic, she had spinal surgery to release her tethered cord.With early intervention and therapy, Norah is mobile with the use of Smo bracing. Some kids with Spina Bifida have little to no issues with typical mobility, where others use reverse walkers, forearm crutches, or wheelchairs to aid in their mobility.Norah does anything anyone else would do, even if she has to do it a bit differently. She doesn’t let her diagnosis get in her way of achieving anything she sets her little mind to!As a parent of a child with Spina Bifida, I have learned to find my circle, I have surrounded myself with a community of other families that deal with the same day to day differences that we do. I have learned to never take no for an answer, to be the best advocate for my child, and to encourage my child to find a way that makes it possible for her to do whatever she sets her mind to. I also encourage discussion when we see other people who might be inquisitive about my child’s differences. Education is key! I teach Norah to be proud of her scars, she is a champion. She is fierce. With awareness, comes advocacy, and with advocacy comes acceptance.Norah is not just a kid with Spina Bifida. She represents SB by being a compassionate friend, a ballerina, a giver, a singer, a lover of all things purple, glitter or Disney. She does not suffer from her diagnosis, she lives to spread awareness of differences! Norah is full of sass, spunk, and sparkle.To any family who has a family member who is new to this world of Spina Bifida, I encourage you to love. Love the way your child smiles, love the way they giggle, love their eyes, and their fingers and their toes. Though the journey might be a bit more trechourous than you anticipated, every accomplishment makes that journey even more worth it!” -Mom, Amanda Kerr
“Lydie was about ten seconds old, on my chest, when the doctor told us it looks like she has spina bifida. She was born with a closed lipomyelomeningocele (fatty mass) protruding from her lumbar area. Nothing had been detected during my pregnancy because she was not leaking spinal fluid. No tests would have come back positive for spina bifida, had we chosen to have them. At three months old, Lydie had her first (of many) uti and was near sepsis by the time we figured out there was a problem. We had our first (of many) trips to the ER and our first experience with Valley Children’s Hospital. At 4 months, Lydie had a release of tethered spine surgery, a few days later she got an infection. We spent 2 months at Valley Children’s. After many ups and down, and seven surgeries, we received a miracle and did not require a shunt, a real answer to prayer.
Faith and hope in the Lord is the only thing that kept us going. We were told she may never walk or be potty trained. Lydie proved everyone wrong and began walking on her own at 18 months. We are still praying for her complete healing. Today, Lydie is almost three and an amazing little girl. She is kind, happy and beautiful! She is a real joy to everyone she meets! We are excited for her future. She loves Peppa Pig, swings and playing with friends and siblings. She’s starting to sing along with the radio and dance till she gets dizzy and falls down laughing.” -Mom, Melissa Knickerbocker
“Jefferson is an amazing example of not letting life get you down, and not letting a “disability” define him. We were informed at 20 weeks in utero that there was a problem. The numbers from my blood work had shown Spina Bifida was present, but ultrasound exploration was inconclusive. We were given the option to abort him, but there would be multiple risks for his twin sister, and neither one of us felt that it was an option regardless of the outcome. That day my birthing plan changed drastically. CSection was mandatory to avoid any further damage to Jeffersons spine. We would have no idea until after his birth how drastically this would affect all of our lives. When the twins were born they were both immediately taken from the room so I did not know for 3 hours what was happening. Jefferson was whisked by my room for a quick peek on his way to surgery at Valley Children’s Hospital, but I still had not been told what his full diagnosis was. Maggie was in the NICU at Community Hospital of Fresno with me. I stayed three days. I saw her often, walking the halls much to the surprise of the nurses who expected me to be resting or in a wheelchair. I was able to visit Jefferson on the 3rd day for 30 minutes. I was then showed pictures of his spinal column. He had a hole about the size of a nickel in his L4/5 region. It was completely exposed at birth, and the had done surgery to repair it by basically zigzagging his back together. He has a Thunderbolt appearing scar from his tushy to about his waistline. We were not told much at that time. Over the course of the next month I shared time between Valley Children’s and Central hospitals. Maggie was priority. We wanted to get her out so she could be “portable” and therefore be with her brother. She was released on December 20th. We immediately went to Valley Children’s where the twins got to be nextvto each other for several minutes!! You could see a difference in both of them at that moment. Jefferson, who was expected to stay several more weeks, was released on December 23rd!! We were able to take them both home for the holidays!! We still didn’t know much. Jefferson needed to be catheterized at least 4 times daily to ensure his bladder was empty. We had weekly visits. He was not expected to have much use of his lower body, no control over his bladder or sphincter, and was expected to have some mental function lapses. His neurosurgeon placed a shunt to release fluid build up in his brain at about 2 months, and it failed on St.Patricks day and he was in surgery the majority of that day getting a revision done. Since then he has surpassed each and every diagnosis we’ve been given. He wears braces on his legs, but they are only for his ankles. He gets a catheter as needed, which isn’t much considering he won’t stay off the potty!! He even squeezes his own little belly saying “go peee!” Just like we used to do to him! He uses a walker to assist his balance, but lately that too has been minimal as he’s up to 35 staps on his own!! That can practically get him anywhere! Jefferson is amazing. He is happy, si willing to learn, and I think a little stubborn! He lives to antagonize his twin sister, and knows exactly what buttons to push! He’s obsessed with electronics and the manually controlled Christmas tree only needed one ornament this past year since he was completely entertained turning the lights one and off for hours at a time!!
He has unlimited potential and I think at this point he’s simply enjoying proving doctors wrong at every turn!!!” -Mom, Aubrey Mathis
“Christopher is just like any other 7 year old boy. He loves to ride his bike, play soccer and basketball, and watch from the bleachers as his brother plays baseball. There is nothing he can’t do, if you ask him. He lives his life without fear or limitations. In a house with 6 kids, you have to do everything you can to stand out, and that’s just what Christopher does.Christopher was born with Myleomeningocele Spina Bifida, a birth defect in which the spinal cord does not properly form in the womb. Christopher’s lesion, the site of the defect, is located around the sacral area of his spine. The sacral area is where the tail bone is located. Because of his defect, Christopher was also born with bilateral club feet and hydrocephalus, an increase in spinal fluid surrounding his brain.Waiting for Christopher to arrive was the hardest part of our journey, so far. We didn’t know what to expect. We weren’t sure if he would be able to walk or if he’d have any developmental delays. The weeks after his birth were also very trying. Christopher spent what felt like an eternity, but was really only 5 days or so, in the NICU at Valley Children’s Hospital. Hours after his birth, he had his first of 7 surgeries to close his lesion. Days later, he had surgery number 2 that placed a VP shunt that helped move the spinal fluid through his body. The day we got to bring home our baby was one of the best days of our lives.Watching Christopher grow from that tiny, fragile baby into the spunky first grader he is today continues to be this family’s joy. Christopher was the youngest of 5 boys and 1 girl until last year when we were surprised by his little brother, and he inspires each of his siblings every day. His drive and determination does not go unnoticed by those who cross paths with him. When I say there is nothing Christopher can’t do, I mean there is nothing he won’t try. He might not run as fast as the other boys in his class or jump as high, but that doesn’t keep him out of the race.I have had the opportunity to speak with parents who have recently received the diagnosis of Spina Bifida and each time I do, I meet them with encouragement and understanding. It’s a scary time, but when I think I if it, I think of my handsome boy and how far he has come. I share his story in hopes that those parents who are frightened will read it and know that there is hope. Spina Bifida is part of our life, it is not our entire life. We no longer fear it. We let our boy live without limitations and hope that the world will do the same.” -Mom, Patricia Mendez
PHOTOGRAPHY DONATED BY ANGELA ELLER & BRITTANY WILBUR
EMILEE :: nonimmune fetal hydrops, inter stroke, spastic cerebral palsy, optic nerve hypoplasia
Meet Emilee! At 18 weeks Emily’s parents found out that she had nonimmune fetal hydrops. She received two inutero blood transfusions and had an inutero stroke. Emily was born at 34 weeks. She started early intervention therapy as soon as she came home from the hospital. She continues to receive weekly physical, occupation, speech and horse therapy. Emilee can army crawl and roll and she is gaining strength each day. Emily is a happy and silly little girl who loves music and pretty lights. She is very smart and uses “yes” and “no” signs to communicate.
Please join Sweet Nectar Society in sending extra love to Emilee and her family!
PHOTOGRAPHY DONATED BY CARINA DUNMORE PHOTOGRAPHY
ANDRES :: Premature Birth, Chronic Lung Disease
Meet Sweet Andres! Andres was born at 24 weeks weighing 2 pounds and 12.9 inches long. He was a fighter from day one. Andres was growing and developing well until her was 4 months old and got an infection on his heart (endocarditis). Andres had surgery at Stanford with complications which lead to a vocal chord paralysis. Andres continued to have issues with his respiratory system and was failing to thrive. He received a trach and a gtube and is now thriving!
Andres is a happy boy who continues to give this life all he has! Please join Sweet Nectar society in encouraging Andres!
PHOTOGRAPHY BY VICKI SUNDERLAND