Del Mar Highlands Town Center and Shine Illumination got together to gift Brooklynn this special holiday sea star to bring the gift of true holiday cheer to this family. It will now sit on the family’s property in Lakeside to bring happiness to Brooklynn each day.
Center gives family huge holiday sea star after it sparked joy and smiles from a 5-year-old girl who suffers from CDKL5 deficiency disorder. The 6+ foot holiday sea star was delivered to Brooklynn Jarvis yesterday, Dec. 19.
Source: Del Mar Highlights Town Center
December 20, 2020 (Lakeside) – Del Mar Highlands Town Center is showing the spirit of the season with its surprise gift to a local customer who had a joyful experience on property in December.
Del Mar Highlands Town Center’s annual holiday “’Tis the Sea Sun” display features larger than life décor, from a towering 36-foot Christmas tree made of 44 surfboards to bright orange holiday sea stars adorning Santa’s red hat. When the Jarvis family visited Del Mar Highlands Town Center in early December, little did they know they would get the holiday spirit in action.
Their daughter, Brooklynn Jarvis (age 5) suffers from CDKL5 deficiency disorder. She has had seizures since she was two months old and suffers with severe developmental problems. She loves bright colors and lights so when the family came upon the "tis the sea sun” themed holiday decor created by Shine Illumination, Brooklynn beamed with a beautiful smile. Her family was so excited they shared pictures of this incredible moment for their daughter at the Center with support groups on Facebook.
“When I received a message from Ashley Triplett-Jarvis about her daughter’s experience, I immediately contacted Del Mar Highlands Town Center,” said Bruce Brenon, CEO of Shine Illumination. Donahue Schriber, the owner of shopping center, did not hesitate and jumped at the chance to bring some joy to Brooklynn. “We created this Center experience to make these moments for customers and we wanted to step up for this little girl. These are significant pieces to create, manufacture, and install. We’re meeting the family this weekend to bring the sea star to their home for the holiday season. We hope it will bring even more smiles to Brooklynn Jarvis and her family.”
A “Believe in Brooklynn” Facebook page shares detail about Brooklynn Jarvis’ progress and how her family and community come together to support her care; it can be found by visiting www.facebook.com/believeinBrooklynn.
More about Believe in Brooklynn, from Brooklynn Jarvis’ mom, Ashley Triplett-Jarvis.
Brooklynn began having seizures at two months old, which progressed into Refractory Epilepsy. This means her seizures will not be controlled by medications. We received her CDKL5 diagnosis when she was nine months old after lots of blood work and Whole Genome Sequencing. As she grew, we noticed she was not making eye contact, and she later received a Cortical Visual Impairment diagnosis. With that, she does not find much interest in visually attending to things, but she LOVES bright colors and lights.
Under the CDKL5 diagnosis, there are also many more developmental problems. Brooklynn cannot walk, talk or feed herself. Her diet consists of pureed foods and drinking from a bottle. She takes medications daily for acid reflux, seizures, sleep apnea, liver & kidney function as well as supplements for digestion, brain development and vitamins. We are always scheduling appointments with her many specialists; primary care, neurologist, epileptologist, geneticist, ophthalmologist, optometrist, sleep specialist, gastroenterologist, orthopedist and cardiologist. Brooklynn also attends physical therapy, occupational therapy and has attended hippotherapy and swim therapy.
In hopes to help minimize her seizures, Brooklynn recently underwent a VNS Implant surgery. We are hopeful she will heal with no complications and we will see some improvement with her seizures soon.
Aside from her CDKL5 diagnosis, Brooklynn is a happy and healthy five-year-old girl. She enjoys swinging, going for rides in the golf cart, cheering on her sister at volleyball tournaments, swimming in her swim spa, flying on airplanes, traveling to new places, playing with her two dogs, and spending time with her family. Her most favorite people are her parents and her sister Madison.
Although she cannot talk she has her own way of communicating her wants and needs by making certain noises and clapping her hands. Brooklynn cannot yet walk but she manages getting to where she wants to go by hopping on her knees, rolling and standing on her own while trying to take unassisted steps. In an effort to help spread CDKL5 awareness, we have created a Facebook page that documents our daily life with CDKL5.
You can follow this page at www.facebook.com/BelieveInBrooklynn. Our family lives by the of quality of life over quantity philosophy and are thankful for each and every day we have to spend with her.