Charlie Nath, 11, has a simple message to share with the world.
Charlie Nath, 11, is many things. He’s funny. He’s smart. He’s articulate. He’s courageous. He’s a surfer. He’s a snowboarder. He’s a drummer.
What he’s not, is defined by his rare genetic condition: Crouzon syndrome. He says he wants the world to know, “It’s what’s on the inside that matters the most.”
Changing the world one speech at a time
Crouzon syndrome is estimated to occur in about one of every 62,500 people. It affects each person differently and the severity varies widely. The condition occurs when there is an abnormal fusion of the facial bones and skull, which affects the shape of the head and the appearance of the face. For Charlie, his eyes are set wider apart than normal, he has prominent eyes and his upper and lower jaws don’t align properly. Read full post »
Watch little Alexis (Lexi) Melton, 7, Irish dance across a stage, or effortlessly ski down a slope, and you would never guess the hurdles she’s had to overcome in her short life.
When Lexi was born, her family didn’t know if she would survive. Her extremely rare craniofacial condition literally makes her one in a million. But her story isn’t one of heartache, it’s a story of hope.
Lisa Skylynd, Lexi’s mother, never let anything hold Lexi back, not even her complex medical condition. She always told her,
“If you want to dance, you should dance. If you want to run, you should run.”
And that’s exactly what she’s done.
“Lexi is not only alive today because of the care she received at Seattle Children’s; she’s living her life to the fullest,” added Lisa. Read full post »
New experiences can be scary for children, and a hospital stay is probably one of the scariest new experiences for any child and their family. When a child or teen is scheduled for an overnight or extended hospital stay, parents can be confronted with not only the needs of their child, but also the anxiety it may create for the entire family.
Social workers can help families with many aspects of a hospital stay, from providing emotional support to more tangible needs like insurance and financial assistance. Ashley Peter, a social worker in Seattle Children’s Craniofacial Center, has found that many parents come in with similar questions, but are unsure of where to turn to first.
“As social workers, our goal is to make sure families know there is support available for a variety of needs, regardless of their situation,” said Peter. “We realize that being in the hospital is a lot for families to adjust to, which is why we are here to guide them through every step of the way.” Read full post »
After Olivia Bush was diagnosed with single-suture craniosynostosis, her parents did not know how her brain would develop over time. A new study led by Seattle Children’s is addressing these concerns.
Seattle Children’s researchers have published the results of a 10-year, multi-site study tracking the cognitive development of children with single-suture craniosynostosis from infancy to school age. The results could help families and clinicians better predict which children with this condition are at greater risk of having learning deficits so that they might intervene early in the child’s life.
The research is significant for parents like Cindy and Todd Bush. Twelve years ago, Cindy and Todd learned their 3-month-old daughter, Olivia, had craniosynostosis, a condition in which one or more of the special joints in a baby’s skull (sutures) grow together (fuse) earlier than normal. When these joints come together too early, a baby’s skull cannot grow properly. Craniosynostosis occurs in approximately one in 1700-2500 live births. Corrective surgery to restore the suture is preferentially performed in the first year of life. Read full post »
The first thing Dr. Michael Cunningham noticed was the crowding. Hundreds of African mothers and their young children, pressed shoulder to shoulder in a time-worn hospital’s hallway, waiting patiently for hours — if not days — to receive cleft lip and palate care for their child. It was then when he fully understood the importance of his goals in Africa and how much work lay ahead.
In honor of the New Year, we’re taking a look back at some of our most popular and memorable blog posts from 2014. Below is a list of our top 10 posts. Here’s to another great year of health news to come. Happy New Year!
Two doctors at Seattle Children’s went the extra mile to save Tatiana, one of the sickest babies they’ve ever seen. They got FDA approval to use a long-forgotten drug and are now inspired to help make this drug available to save more lives.
AJ Hwangbo was a happy-go-lucky 6-year-old without a worry in the world until mid-November when he developed a life-threatening heart condition. While specialists at Seattle Children’s Hospital helped AJ heal physically, the young boy struggled to bounce back emotionally. But, AJ’s joyful spirit returned after hospital staff arranged for him to meet his hero – local artist Macklemore. Read full post »
Discovering your child has a craniofacial condition can be a stressful time filled with questions and uncertainties. Seattle Children’s Craniofacial Center aims to not only keep the patient’s needs in mind, but also the needs of the entire family. Below are the stories of two unique craniofacial journeys and how the patients and their families received support throughout the process.
Genesis and family find comfort after early diagnosis
Genesis Murillo is a fun-loving, 4-year-old who was born with bilateral cleft lip and palate – a birth defect that occurs when parts of the lip and roof of the mouth don’t fuse together during pregnancy. Cleft lip and palate affects one in 700 infants worldwide, and is one of the most common birth defects. It can be caused by several factors, including genetic abnormalities, but there is no single cause.
The sun was bright when Lyla Conrad and her father arrived early for softball practice to catch a few pop flies. Lyla, 9 at the time, had caught hundreds before, but that day she lost one in the sun. It fell straight down into her eye. Almost immediately, her eye was swollen and she felt incredibly nauseous.
“We thought she had a concussion,” said Sari-Kim Conrad, Lyla’s mother. “We never thought a softball could do so much damage.”
After receiving an initial check-up at a local emergency room, she was transported by ambulance to another area hospital for further tests. The diagnosis: an orbital “trapdoor” fracture. Lyla would need surgery, and soon. Read full post »
Christian Roberts was as excited for his 12th birthday as any child would be. But this April marked a very special occasion. It was the first time he could express that excitement with a smile.
Twelve years ago, Christian was born deaf and with bilateral facial paralysis due to a rare genetic anomaly called CHARGE Syndrome. For his entire life, the happy, playful Dallas boy who loved video games and LEGO bricks couldn’t move his facial muscles to smile. Christian wanted nothing more than to better communicate with his family, and with others who don’t know sign language.
Seattle Children’s provides healthcare for the special needs of children regardless of race, color, creed, national origin, religion, sex (gender), sexual orientation or disability. Financial assistance for medically necessary services is based on family income and hospital resources and is provided to children under age 21 whose primary residence is in Washington, Alaska, Montana or Idaho.