Live Sweet + Love All

Everett :: Down Syndrome

A sweet reflection from Everett’s momma, Kathleen:

“Our little Everett was born July 7th, 2011, he was 3 days late. The only reason we went to the hospital that day was because Everett hadn’t been very active and we wanted to make sure he was doing ok. A few hours later we were having an emergency c-section because his heart rate was dropping. He didn’t make a sound when they took him out. I didn’t even get to see him before they rushed him off to the NICU. After a few hours a doctor came up to tell us Everett needed to be rushed to the Children’s Hospital to be on a stronger breathing machine. He also told us Everett had some “unique features”. The way his nose looked, how his eyes were a little too far apart, how his ears were a little low. He wouldn’t come out and say it but we knew what it meant, Down syndrome. It took 2 weeks of breathing machines and 4 more weeks working on feeding before we finally got to bring him home. What we’ve really found amazing though since having Everett is the amount of support there is from the Down syndrome community. The future seemed somewhat bleak before we started meeting other parents, going to groups and events and realizing that we’re actually going to have a pretty exciting adventure ahead of us. We can’t wait to see what each new day brings. ”

Music licensed by Song Freedom :: "Must Be" by Cyra Morgan

Photography by Brittany Wilbur

Destine :: Inoperable Brain Tumor

Destine is a beautiful 9-year old girl with a lot of spirit and heart. Destine has an inoperable cancerous brain tumor and she has endured nearly 100 different surgeries. Destiny is such an amazing inspiration to me because regardless of her trials she continues to maintain a bright and positive outlook on life . During our session Destine enjoyed time joking and laughing with her two older sisters and her mom. Her family has truly come together and the sisters have formed a strong bond with one another.

Music Licensed by Song Freedom :: Crya Morgan | Hummingbird

Photography by Brittany Wilbur

Lilly :: Short Chain Fatty Acid Oxidation Deficiency

Lilly was born with a rare genetic disorder, SCAD which is short for Short Chain Fatty Acid Oxidation Deficiency. This means that Lilly’s mitochondria cannot use fat as a source of energy to keep her body’s organ systems functioning properly. This has led to spending half of every year in the hospital due to seizures, feeding intolerance, and illness her body cannot fight off. Lilly also has a cerebral folate deficiency which means her body does not produce enough of the folate neurotransmitter to keep her brain functioning properly, this has caused global developmental delay, autism, movement disorders and seizures. Despite all of her health problems, she has continued to grow, thrive and enjoy life. Lilly is beautiful, happy, and has the sweetest giggle you will ever hear.

To find out more about Lilly's condition check out this informative link:
 http://ghr.nlm.nih.gov/condition/short-chain-acyl-coa-dehydrogenase-deficiency

Photography by: Carrie Anne Miranda

Music licensed by Song Freedom: Beautiful Girl, Beautiful World

Thomas :: Cerebral Palsy

Thomas was born extremely premature :: 25 weeks gestation and weighing 1 lb. | 12 oz. At birth Thomas was only given 20% chance of survival but this little fighter gained strength and was able to go home after his 3 months stay at Children’s Hospital. When Tom-Tom was 1 year old he was diagnosed with Cerebral Palsy that effects both of his legs and his left arm. Cerebral Palsy does not stop this little miracle from doing all of the things he loves. He is such a bright and inspiring little boy to all who have been involved in his life. Thomas proves each day that he can achieve anything with his determination and his willingness to learn.

Photography by Brittany Wilbur

Music licensed by Song Freedom :: Tyrone Wells | Head Over Heals

Hugo :: Biphenotypic Leukemia

Hugo is battling both A.L.L. (acute Lymphoblastic leukemia) and A.M.L. (acute myeloid leukemia) and desperately needs the help of a bone marrow donor. Hugo’s family has not been found to be a match so he needs an outside donor. If you have not been swabbed for the bone marrow registry, please consider doing so. It can save a life. It is safe, easy , and all it takes is a simple cheek swab to see if you are a match! Help say Hugo and others just like him. He deserves a chance to live out his childhood, he needs you to do that. You can order a home swab kit at https://www.dkmsamericas.org/register or http://marrow.org/Join/Join_the_Registry.aspx

Photography by: Brittany Wilbur Photography and Carrie Anne Miranda Photography

Music licensed by Song Freedom: This Kind of Love by Sister Hazel

Madyn :: Acute Lymphoblastic Leukemia

On June 3, 2011 at 20 months old Madyn was diagnosed with Acute Lymphoblastic Leukeimia (ALL). Madyn is now in the maintenance phase and she will continue to fight with daily medication for the next 1 1/2 years. Madyn’s family including her big sister Leila just adore her. She is a special little girl with such a bright spirit.

There is a blood drive going on today with ABC30 and Baskin Robbins, called the Pint for Pint Blood Drive, Madyn will be one of the featured children at that drive, to find out more check out the ABC30 news story HERE.

Photography by: Brittany Wilbur and Carrie Anne Miranda

Sandra, Gerardo, and Mateo

The Espinoza family are made complete with three amazingly beautiful children, Sandra, Gerardo, and Mateo, each bring a unique dynamic to this special family. The Espinoza’s live each day with a positive outlook and abundant love for their family.

Sandra is ten years old and has bright almond shaped eyes. She was born with RETT syndrome; a disorder of the nervous system that leads to developmental reversals that often effects females. To learn more of Rett syndrome please visit this resource page.

Gerardo is five years old and has autism. He is full of energy and big smiles. During our session it was refreshing to see this little man running and laughing with his little brother. His giggles brightened our day!

Mateo is three years old and has completed classes at Lori Anne Infant Program for autistic-like tendencies. Like his brother, Mateo is full of life and joy. He is as cute as can be with his charming little smile.

Please take a moment and visit these resource pages dedicated to Rett Syndrome and Autism.

Photography by Brittany Wilbur and Carrie Anne Miranda

Izzy :: in-utero stroke

Izzy is a fun loving, energetic soon to-be three year old with an infectious smile. Isabel “Izzy” was born on September 9th, 2009. Soon after being introduced into this world, Izzy’s mom noticed that there was something not quite right with her new baby girls left eye, it would not open. Doctors seemed to brush it off as a reaction to the drops that were put in her eyes and say to give it some time, but mothers know best. Izzy was soon evaluated by another doctor who sent her to get further testing at Children’s Hospital. After many tests it was determined that Izzy had suffered a stroke in-utero which damaged her third cerebral nerve. Izzy’s diagnosis include: Cerebral Palsy, Hemiparisis and a distorted eye due to the stroke.

To read more about Izzy’s story and learn about in-utero and newborn strokes please visit www.brendonssmile.org {Izzy was their June Stroke Hero 2011}

Photography by Bree Wilber

Music You Are My Sunshine by Elizabeth Mitchel

Abigail :: Down Syndrome :: Autism

Abigail just celebrated her 9th birthday! She is a carefree little girl who just lights up her big family’s life! She has both down syndrome and autism, but has the gentlest demeanor. Her mother says she does not have a negative spirit in her body and is just the sweetest happiest, little girl.

To learn more about down syndrome check out the Down Syndrome Association of Central California

Photography by: Carrie Anne Miranda
Music licensed by SongFreedom: Jess Penner - All Smiles

Annalyce :: hypoplastic left-heart syndrome

Annalyce is a free spirited five year old girl who loves to dance and sing. She was born with hypoplastic left-heart syndrome, a complex and rare heart defect diagnosed at birth where the left side of the heart is critically underdeveloped and cannot effectively pump blood to the body, this the right side of the heart must pump blood both to the lungs and to the rest of the body. Annalyce has already undergone three open heart surgeries and is in need of a full heart transplant.

For more information about Annalyce and her journey please connect with her support Facebook page.

Upcoming events for Annalyce:

-Benefit BBQ Dinner: Saturday, July 14 at the Exeter City Park. Tickets are $10.

-Benefit BBQ Dinner: Saturday, July 21 at Tulare Divino Espirito Santo Portuguese Hal. Tickets are $10.

For more information please contact Ron Carter at 559-303-4877

MUSIC :: the afters, life is beautiful

PHOTO :: brittany wilbur

Brayden :: Down Syndrome

Brayden’s parents found out prenatally at 19 weeks gestation that their son would be born with Down syndrome (Trisomy 21). It was a shocking and tough diagnosis initially, but with some time they felt like God was preparing them for the biggest blessing of their lives. They had 4 months to prepare for his birth and when that day came they were so excited to meet him! Brayden was born at 38 weeks gestation with no health issues. He was an absolute angel from day one and still is. They started every therapy that was available to him from 2 months on…After he turned 3 years old, he started attending a full inclusion preschool class where he has thrived. He is an absolute joy to be around and they can’t imagine life without him!

Photography: Carrie Anne Miranda
 Music : You are my Sunshine - Elizabeth Mitchell

Jordan :: Rett Syndrome

“Rett Syndrome is a unique developmental disorder that causes problems in brain function that are responsible for cognitive, sensory sensation, mood, movement, breathing, cardiac function, chewing, swallowing, and digestion… Rett Syndrome can present many challenges, but with love, therapy and assistance those with the syndrome can benefit from school and community activities.” –www.internationalrettsyndrome.org

Jordan is a beautiful little girl who will soon be celebrating her 4th birthday {in July}. Jordan was diagnosed with Rett Syndrome when she was 1 1/2 years old. Despite the difficulties Rett brings to daily life, Jordan is a happy girl filled with lots of giggles. Her favorite show is Dora the Explorer; turn on Dora and Jordan is enthralled with its bright colors and cheerful music.

Jordan’s teachers and physical therapists have been able to work with this little sweetie and she now is able to stand with assistance. One characteristic of Rett Syndrome is seen by the person with Rett continuously putting their hands in their mouths; a very special teacher to Jordan has been able to help her control that movement. Jordan is surrounded by people who love her dearly and encourage her to reach her full potential. To learn more about Rett Syndrome please visit www.internationalrettsyndrome.org