Evely is a sweet and loving three-and-a-half year old little girl who resides in Simpsonville, South Carolina with her mom, Tameka, her dad, Jonathan, her big sister, Luna (5), and her little sister, Skye (2). Evely loves to spend her days with her family, going to the library, and swimming in the pool. She is a very sweet little girl who loves to cuddle and is equipped with a smile that can light up a room. Her story serves as a testimony to always march forward and to see and be the good that can help light up the world.
Evely’s mom, Tameka had a normal pregnancy with Evely. There were no red flags and Tameka left every appointment, check up, and ultrasound with good reports. The labor and delivery was similar. Tameka birthed Evely at a birthing center and felt like it was a personal, quiet, and intimate experience. It was the perfect setup for her to bring her second child into this world. The labor and delivery went smoothly and soon enough Evely was safely born and snuggled up in her mom’s arms.
As the midwife was examining and taking pictures of Evely, she noticed something with her eyes. She pulled Tameka’s husband, Jonathan, to the side and told him that Evely was going to be transported to the hospital since Evely was not responding to light. At the hospital, doctors put Evely through numerous tests to try and determine what was going on. Evely was born at 6:34 in the morning and spent the entire day being poked and prodded. At 10:00 that night doctors told Tameka and Jonathan that Evely’s eyes had not developed in utero – a condition called bilateral anophthalmia. Tameka shares, “Obviously I’m aware that people are born blind, but to be born without eyes was just insane to me.”
Tameka goes on to say, “We were thinking, people without vision live full lives so that’s kind of how we were wanting to think about it. Little did we know, we continued to learn things about Evely as she got older.” Three months later while on a family vacation, Tameka was very unsettled with Evely’s behavior. Every had not seemed very happy, she slept a lot, and she cried a ton. She also lacked expression and was not showing interest in anything. All of the doctors wrote it off saying it had to do with being visually impaired, but during a vacation, Tameka noticed that Evely’s feet were swollen and she knew in her gut that something was wrong. She called the pediatrician back home and he encouraged her to take Evely to the hospital. They went to the hospital in Savannah, Georgia and it was there they discovered that Evely’s heart was failing.
After spending some time in the Savannah hospital they were transferred to Charleston, South Carolina where one of the top cardiologists in the country worked. Evely was admitted to the pediatric intensive care unit and the staff was unable to give any outlook on how long they would be there or what was going on with Evely, other than the heart failure. Doctors could see that her heart had major issues, but they were unable to say why. Eventually, it was found that Evely had pulmonary hypertension, two holes in her heart, a severe micro valve leak, and an enlarged heart. She ended up having two procedures on her heart during her stay at the hospital in Charleston, and a G-tube was also placed so that she could receive extra calories and would not have to work so hard to nurse.
“Doctors whose speciality were hearts and had only been doing hearts for all of their careers were saying to my husband that they had never seen anything like this and that her situation was different,” Tameka says. “Everything about that was scary. You like for a doctor to say that we’ve seen this before.” After Evely’s heart procedures, Tameka says that she was a completely different child, for the better, and her heart was not even healthy yet.
Once they left the hospital, Evely was on several different medications for her heart and for GERD, gastroesophageal reflux disease. Later that summer she was officially diagnosed with microcephaly and hyptonia, low muscle tone, which explained her physical delays. “It just felt like it was just boom, boom, boom,” shares Tameka. Once they received these diagnoses they started the therapies that come with it – physical therapy, occupational therapy, speech therapy and vision therapy. Tameka and Jonathan had to learn how to navigate this new world, while also parenting Evely’s older sister, Luna, who was just a toddler at the time.
Just before her first birthday Evely received her first pair of prosthetic eyes. The prosthetics do not do anything as far as improving her vision, but they give her the appearance of eyes and help continue the growth of her sockets. As Evely continues to grow, they will go every 6 months to see the doctor who adjusts her prosthetics.
This year, Evely was found to have obstructive sleep apnea which results in her airway collapsing about seven times an hour throughout the night while she sleeps. “Because she doesn’t have eyes and because she is naturally blind her body does not produce melatonin so sleep in general is a struggle for her,” Tameka says. “It’s scary. It’s terrifying. I’m always afraid I’m going to fall asleep too hard and won’t hear if something is going on with her,” Tameka shares. Tameka will be scheduling surgery soon to attempt to correct Evely’s sleep issues.
Tameka and Jonathan wonder if all of these diagnoses are related, and if there is something in Evely’s genetic makeup that is causing all of these issues. The answer for now is unknown. Tameka says, “We have seen some of the best genetic doctors and counselors around. We’ve all been tested. We’ve done all of that and still no answers. No syndrome has shown up.”
Tameka and Jonathan will continue to push forward and search for the answers that their daughter so rightly deserves. They are learning to navigate the unknown and lean on one another for support. They continue to search for answers for Evely and in the meantime, they are celebrating the moments that we can far too often find ourselves taking for granted. Tameka confesses, “We have learned to really celebrate those small moments because we don’t know at this point what we’re going to get. If there’s anything else after this. We don’t know if we will be able to celebrate first steps with Evely. We don’t know if we will celebrate first words with Evely. The small victories are not small. So we make a big deal, we make a huge deal about those things.”
Time to get loud shouters!
Throughout the month of September we will be shouting love for Evely and her family. It is a great honor to be able to tell Evely’s story and we hope you will join us in getting to know them.
So click here to shop now where every purchase will go towards the purchase of a Sleep Safe Bed for Evely. You can also start a monthly subscription and shout love for great families each month!
Join us in shouting loud for Evely!