There is no better way to understand Skyler’s life, than in his own words…
“I guess my life has been a diamond in the rough, being born in Hawaiʻi but growing up in California. My Aunt/Mom used to tell me to stick to reality instead of fantasy for I always talk about the future instead of now. I think of that now and how she is not here with me today for she was my hero and by her grace what I am today. What she had to fight after my biological mother passed away and all my challenges she had to face and see what I went through as I grew up making her my mom. By her dying of cancer I started to not care about my medical; for how I am alive, but she not. For I wasn’t done yet achieving my goals to give back. Show her with all her hard work it paid off, cuz after high school I knew my work wasn’t done. I wanted to be successful with a career to show I finally made it and that’s what I meant at her funeral that I haven’t made her proud. For about 5 years I've been depressed and it has been my hardest challenge. Then it got me thinking that I can’t complain or feel down for I am a person that doesn't like when I’m looked down upon even though I’m different and still have my other family to keep proud and help. It’s because I love challenges to prove to people not to feel sorry for me. Also they’re people suffering more than me or going through more. I know today I'm still judged by how I look, but I remember what my idol in life said: ‘Everything negative - pressure, challenges - is all an opportunity for me to rise’ - Kobe Bryant. Lately I have just been moving in silence. As the journey is processed, sometimes it isn't easy but I’m trying. Only God and my Day ones are my true supporters. When I’m listening to music, I feel alive and truly myself; for that’s why I rap and sing. As a performer I go by my middle name Auston Ray.”
-Skyler Auston-Ray B. Salvado
Aloha! Skyler Auston-Ray B. Salvado, aka Sky.
Skyler and his siblings tirelessly campaign to help support his lifelong medical journey. They know that this account of his life journey will help spread awareness about how unique and rare each case of Sturge-Weber syndrome (SWS) can be by highlighting Skyler's individual experience and huakaʻi (journey). Skyler and his family want others to know that this is a disease that needs more awareness! Skyler hopes that by sharing his story, vulnerably, and unedited, he can bring awareness to the need for more specialists who can educate others on Sturge-Weber syndrome. Skyler's story tells of hope, bravery, perseverance, enlightenment, and grit!
Mahalo for your support!
Sturge-Weber Syndrome (SWS) is a rare medical condition that only 1 in 20,000-50,000 babies are born with per year. It is a degenerative disease that brings about life-long ailments such as, epilepsy (seizures), neurological problems, cognitive difficulties (learning curves), glaucoma, a vascular malformation, and includes a distinctive Port-Wine Stain (Nevus Flammeus). In some SWS cases, such as in Skyler’s case, individuals can also have hydrocephalus (CSF; excess cerebral fluid that can cause detrimental effects on brain functions and increased head circumference). Each case of SWS varies in severity and progression, and each individual's care/needs are tied to the interventional need of the affected bodily function.
Skyler’s SWS diagnosis is considered to be ornate and rare. Skyler has ALL of the strong markers of SWS, including CSF which is being treated with a Ventriculo-Atrial Shunt (VP Shunt). His Port-Wine Stain covers about 85% of his upper body. The effects of the Port-Wine Stain depend on the location of the birthmark. In Skyler’s case, it has affected his neurological functions, ophthalmology functions, and emotional and social problems related to appearance. In addition, Skyler is now having difficulty speaking and being understood due to the significant growth of his lip caused by the Port-Wine Stain. The progression of his Port-Wine Stain has caused his treatment for Sleep Apnea to be difficult due to the size of his lower lip. In terms of his eyes, Skyler’s glaucoma in his right eye is extensive and deteriorating. All of the treatment for his glaucoma is merely therapeutic, and its progression is inevitable. In a recent visit, he was told that the pressure in his right eye will eventually cause the glaucoma to spread to the next eye if not properly treated and monitored.
Skyler’s care has proven to be intricate and progressive as he has gotten older. There is no cure for SWS; individuals can only rely on treating the comorbidity of symptoms from a SWS diagnosis.
From the moment Skyler was born, he was a fighter. Skyler was frequently in and out of doctors’ offices and hospitals. His earliest diagnosis foresaw that Skyler would not be able to read, write, or speak, and he would possibly be wheelchair-bound due to his deformations. Doctors were also unsure of how much time Skyler would have due to the extent of his condition. His mother, Ellison, loved Skyler with such fierceness and conviction that she never gave up on him. She insisted on giving Skyler the fairest chance at life, looking to her faith for strength and grit as she faced raising her child with special needs. She ensured that the reconstructive surgeries during the first year of his life took place, despite having to see her baby endure invasive eye and brain surgeries. In a tragic turn of events, when Skyler was only 4 years old, he lost his mother to a car accident that left him and his siblings in the care of their mom’s sister.
Ellison's sister, Malia, took on the responsibility of caring for Skyler and his siblings in honor of her sister's love for her children. Malia and her husband, Vern, moved Skyler and his siblings from Hilo, Hawaiʻi, to California, where she grew into the mother that Skyler regards as his hero—his mommy. Vern was and is still a fundamental part of Skyler’s life; he grew into the father Skyler still turns to today. Skyler's parents and specialist teams at UCLA Medical Center took Skyler's care in stride. His previous diagnosis was void. He was growing into a healthy young boy with the determination, love, and support from his mom, parents, siblings, and doctors. By the time he was 21, Skyler would undergo numerous operations, including, 2 VP shunt surgeries, 4 reconstructive eye surgeries, 1 lip reduction surgery, and 1 round of laser treatment for his Port-Wine Stain (not including the surgeries he received as a baby).
Nevertheless, through all of Skyler’s perseverance in school while facing his medical condition, he was able to graduate from high school as a 3.0 student, attend college on a scholarship, and graduate with an Associate's Degree in Video Production. At this point in Sky’s life, he was all too familiar with unexpected life changes…but nothing prepared him for the journey that would indefinitely bring Skyler home to Hawaiʻi.
Skyler's mother and hero, Malia, was fighting stage four colon cancer for three years. She gained her wings in 2018. Prior to her passing, Skyler spoke with his mom about moving home to Hawaiʻi since all of his siblings and ʻohana were back on the islands…reluctantly and submissively, Skyler moved back home to grieve her loss with his siblings and to keep his promise to his hero. Family was and remains the core of Skyler's values; the only people who got him through the hardest parts of his life were in Hawaiʻi, and his place was with them.
The turning point…
During the COVID-19 pandemic, Skyler was still transitioning from moving home to Hawaiʻi. At this point, he was only able to secure a PCP. All of the ties that Skyler's mom had worked hard to secure and maintain on the mainland were not considered viable options due to the distance and financial obligations. However, this was not a big concern at the time because Skyler's condition was stable and his prescriptions were all up-to-date.
In 2020, Skyler suffered a sudden and life-threatening seizure episode due to his shunt malfunctioning, and his siblings had to rush him to the local ER. He was sent home with instructions to come back if there was another episode. However, his older siblings were not satisfied with this answer. From a young age, Skyler's siblings were very involved in his care and took it upon themselves to be well-versed in his condition. They understood that traditional practitioners always found Skyler’s case to be paralyzing and most times found themselves having to educate doctors on SWS during emergency visits since they were much more familiar with Skyler's condition. Skyler went home and had another episode. His siblings ultimately ended up paying for tickets to a neighboring island so that his shunt could be treated with the proper equipment. This decision would save Skyler's life. Upon his arrival, it was discovered that Skyler's VP shunt had become unset and the excess cerebral fluid in his brain was not being drained properly, which triggered his seizures. In addition, the only equipment and technician able to reset Skyler's shunt was and is only located on this neighboring island. This episode left him hospitalized in the ICU for 4 days.
This experience was a wake-up call for Skyler and his family. It really put into perspective for Skyler and his siblings just how difficult having proper care on the islands would be because of his unique needs during emergency situations. Skyler's needs have aggressively advanced, and he is now seeking specialized care that can adequately address all of his needs.
What will your donation do for Skyler...
Skyler’s doctor visits are long overdue, and he desperately needs to connect with specialists to improve his quality of life by providing specialized care that Hawai’i simply cannot offer. Through fundraising, we can help him make the necessary trips to meet with specialists across the mainland.
Through the diligent persistence of Skyler and his medical advocates, they channeled the necessary steps to get Skyler in front of the right people. After reaching out to The Sturge-Weber Foundation, Skyler's previous doctors at UCLA, and the Jules Eye Stein Institute, they were able to establish care with specialists who are willing to take his medical case and already have doctor’s appointments lined up.
We continue to campaign to help aid Skyler, not just for his upcoming appointment to UCLA in October of 2024, but for his long-term medical journey. Furthermore, his medical care might not always be at UCLA; in the future, it could potentially be at other specialized Sturge-Weber medical facilities located across the United States.
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Authors:
Kaelyn K. Onodera
University of Hawaiʻi at Hilo – B.A. English and B.A. Political Science
Loreal L. Gonzales
University of Hawaiʻi at Hilo – A.S Liberal Arts, and current student of Psychology and Dance Minor
CJ Sweezey
University of Hawaiʻi at Hilo – B.A Hawaiian History, A.S Liberal Arts, Public History of Hawaii Certificate
Skyler A. Salvado
Hawaii Community College – A.S Video Production and current student of Culinary
Follow CJ on Instagram: @clintonjon
