Emily was born on September 1, 2010 in Miami, Florida. Shortly after birth she was admitted into the NICU for low blood sugars and lethargy. After three long weeks of countless tests, doctors could not determine the cause of her low blood sugars. They ultimately decided to send us home with medication to help regulate her blood sugars and referred us to Pediatric Endocrinology. Unfortunately our stay at home only lasted 5 days. Emily continued to be lethargic, had trouble eating and developed pale stools.
On our 5th day home, I took Emily to Miami Childrens Hospital to have outpatient labs drawn. After her lab draw I asked my mom to accompany me to the Emergency Department to have her evaluated. Little did we know that day would be the start of a three month hospital stay.
During Emily’s time in the NICU, a team of doctors worked together to figure out Emily’s underlying condition. After almost 5 weeks in the NICU, Emily was diagnosed with several conditions including Septo Optic Dysplasia/ Optic Nerve Hypoplasia, and Panhypopituitarism. These conditions are part of a congenital disorder called DeMorsiers Syndrome which can affect a persons ability to produce and balance hormones, visual impairments and neurological impairments. We then met with a team of doctors who shared the prognosis of these conditions. We were informed that Emily would need hormone replacement therapy for the rest of her life and that she may have global developmental delays (including but not limited to) speech, physical, and neurological impairments. Emily’s optic nerves were also very small and there was a big possibility that she had very little eye sight. However, the extent of her vision loss could not be determined at the time.
Shortly after, Emily was also diagnosed with Biliary Atresia, a life threatening congenital liver condition that is completely unrelated to the one above. We were told that Emily’s liver was failing and she needed to have urgent surgery to help repair the damage. Statistically, only 30% of children survive this procedure without the need of an immediate liver transplant. The Kasai Surgery was our only option for Emily’s survival.
On October 22, 2010 we handed our baby girl to a team of surgeons and medical staff. We waited (and prayed) for five long hours.
When the surgeon came out she informed us that the surgery was successful! Emily recovered over the next two weeks and was discharged from the hospital in late November of 2010. Her liver has been healthy ever since!
The next few months were filled with endocrinology, gastroenterology, neurology and opthomolgy appointments, physical and occupational evaluations and therapies.
In March of 2011, we had an appt at Bascon Palmer Eye Institute in Miami where we received the devastating news that Emily was completely Blind. I will never forget that day but I will spare the emotional side of it. My husband and I took a deep breath, prayed together and walked out of that office with an open heart about our unknown future with our baby. Our lives were forever changed that day.
Over the next few years we learned how to navigate the world together with our sweet Emily. There was so much to learn about the world of visual impairment, braille and orientation/mobility! We worked hand in hand with the Miami Lighthouse for the Blind to optimize Emily’s life with recreational therapy and services. We focused on braille instruction and cane work every single day. Despite her diagnosis Emily met all her milestones!
Unfortunately it was very hard to receive services through the school system despite having an IEP. That’s when we realized we were being called to leave our beautiful city in order to explore educational opportunities for Emily.
In April of 2014, we ventured out to St Augustine, Florida to meet with the Florida School for the Deaf and Blind. After several evaluations Emily was not accepted in to the school due to her feeding issues. She was extremely picky and would not eat/ swallow solid foods. We were devastated again! We went back home feeling discouraged and defeated but we did not lose hope!
Over the next two years my husband and I researched different state schools for the blind. We inquired a total of seven schools in different states including Florida, Georgia, North Carolina, Texas, Massachusetts, and Colorado. In April of 2018 we came to see the South Carolina School for the Blind in Spartanburg, SC. We instantly fell in love with the school, the staff, and the area! My husband was able to get an immediate job transfer and within three days of exploring the area, he accepted his new position at work, we enrolled Emily at SCSDB and we found our future home! In June of 2018 my husband moved to SC for work and in August of 2018 I brought Emily to SC to start 3rd grade.
We have now been in SC for 4.5 years and we could not be happier with our decision to move to our family here. Emily has two younger siblings which she absolutely adores! She is now 12 years old and is THRIVING! It has been a blessing to have such a wonderful school for her where we know she is excelling in all areas of her education. It is also amazing to see all that she has done and accomplished in her time at SCSDB as well as what the future holds for her!
Today, Emily continues to receive medical care by her endocrinology, gastroenterology and opthomology specialists in Greenville, SC. She has labs drawn every 3-6 months and we adjust her medications accordingly.
Emily participates in cheer and chorus at school. She also takes voice and piano lessons at Converse College in Spartanburg twice a week. She is an absolute joy to us all!
When Emily grows up she wants to be a teacher for the visually impaired, a famous singer/song writer, an Interpreter and an author of a famous book! We encourage her to be all that she feels called to be.
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