Photos and text by Walter Grio.
The 2012 Luly Yang Couture Show kicked off with five children walking down the runway. The show benefited Seattle Children’s, whose mission is to provide top-quality care to every child, regardless of the family’s ability to pay. Although not all of the children who walked the fashion runway met that criteria, they all went through different treatments at Seattle Children’s.
Here are their stories, as provided by Luly Yang Couture.
Selah Joy Ellis, age 2 1/2
Selah was born with a large hole in the wall dividing the left and right lower chambers of her heart. The condition, known as ventricular septal defect or VSD, is the most common congenital heart defect, affecting 1 in 500 newborns. Josh Ellis, her father and an Air Force pilot, says that eventually her heart muscle will grow over a Dracron patch placed on the VSD. One look at this energetic, full of life, nearly 3 year-old and you would have no idea she was born with a large hole in her heart and underwent open-heart surgery at the tender age of just 13 ½ months! Selah’s surgery left her with a large scar on her chest which she calls her “zipper”. Her physician at Seattle Children’s, Dr. Trippel, will follow Selah throughout her childhood to make sure that no problems develop. Selah is wearing a pink and lavender silk duchess and tulle party dress, made of course, by Luly Yang. The design of her dress goes along with her “girly-girl” personality. Selah loves dressing up like a princess and twirling around.
Gabriel Valle, age 12
Gabriel was born with a cleft lip and cleft pallet, at the age of four he was also diagnosed with Multiple Hereditary Extoses, which are boney tumors. Since then he has undergone multiple orthopedic surgeries and has participated in different studies at Seattle Children’s Hospital. Gabriel has attended Camp Korey which was a huge self esteem booster – he loves to play guitars and support The Huskies! Gabriel took on a big role in designing his 3 piece Navy suit with blue pinstripes. He chose a royal blue shirt with purple plaid cuff and collar detail.
Michelle Herczog, age 17
Michelle was diagnosed with Mitochondrial Disease at age 9, after her older sister Sarah was diagnosed. Mitochondrial Disease is an energy disorder that results from the breakdown of mitochondria cells, the cells that produce the energy in the body. Michelle’s symptoms include prolonged fatigue, migraines and developmental academic problems. There is currently no cure for Mitochondrial Disease but Michelle is able to live a fairly “normal” life by taking what is called a vitamin cocktail.
Maya Sundberg, age 8
Maya was adopted from Ethiopia when she was 6 months old. Within days of coming to the US, she was in the ER at Seattle Children’s with breathing difficulties and diagnosed with RSV, a respiratory virus that can be very dangerous for babies. She responded well to treatment and made a full recovery. Maya was also born missing her right hand. She was referred to the Limb Differences Clinic at Seattle Children’s where she was able to meet with rehabilitation medicine doctors, orthopedic surgeons, prosthetics specialists, occupational and physical therapists and education specialists all in one visit! Maya has had a couple of day surgeries and was recently hospitalized for a kidney infection. Currently, she has been receiving treatment for ADHD which includes help from nutritionists, psychiatrists and behavioral therapists.
Shakira Locke, age 5
When Shakira was born, her mother noticed a rash on her face. Within two weeks, the her breath sounded hoarse and a week later Shakira was gasping for air. Doctors discovered that an abnormal lump of blood vessels call a hemangioma was growing out of control insider her throat, on her neck, face and ear. By the time she was 6 months old, she had tubes in her trachea to breathe and a feeding tube in her stomach so she could eat. Hemangiomas are the most common type of tumor among infants. Dr. Jonathan Perkins, an otolaryngologist at Seattle Children’s, put Shakira on a blood pressure medication, propranolol, which had been found – quite by accident – to shrink hemangiomas. Within four months of putting Shakira on propranolol, her tumor was completely gone! Shakira loves to dress up like a princess and was known to twirl around the studio when she visited Luly so it is fitting for her to be wearing a tiered aqua silk shantung and tulle dress with shimmering Swarovski Crystals.