Celebrating World Down Syndrome Day: A Day in the Life of Annie Morey

5-year-old Annie Morey makes the most of every day with a smile that lights up her whole face. Her mom, Courtney, says Annie is the most cheerful person in the house and always makes people laugh.

Annie was born with Down syndrome, a heart condition and pulmonary hypertension. At 4 months old, Annie fought for her life on extracorporeal membrane oxygenation (ECMO) in the Cardiac Intensive Care Unit (CICU). It was during this time that Courtney truly understood the power of the connection between caregivers and patients. After more than 60 shifts of nurses caring for Annie, Courtney finds the CICU culture at Cook Children’s hard to explain. 

“These nurses sacrifice so much mentally and emotionally to provide the highest acute care,” Courtney says. “There is a bubble of heroes in Fort Worth that not everyone knows exists.” 

Today, Annie is a thriving girl who loves reading books, learning French, dancing at ballet class and playing with her brothers and cousins. Courtney has discovered a passion for advocating for children with Down syndrome, inspired by Annie.

Take a peek into a day in the life of Annie.

5:30 a.m. – Annie wakes up, the earliest of everyone in the house. She starts chatting, singing and reading books in her “big girl bed” – a tent that goes around the mattress with special lights. “She wakes up like she’s already had two cups of coffee,” Courtney says.

6 a.m. – Annie goes to the potty. She has been potty trained for more than a year. Then she heads to the kitchen for a gluten-free and dairy-free breakfast. Annie eats very healthy food. The more consistent and predictable her day is, the happier she is.

6:30 a.m. – It is time for Annie to get dressed. She doesn’t like having her hair brushed, but she loves brushing her teeth. She compliments herself on how good her outfit looks. Her “shoe house” is what she calls the shoes by the back door, and she picks out a pair before getting her backpack.

7:30 a.m. – Courtney takes Annie to the cardiologist – the longest appointment. Annie gets very upset about anything medical-related, so Courtney and Spencer, Annie’s father, let her know the day before appointments. Courtney also takes Averie, a TCU premed student, to appointments. She serves as their personal child life specialist; while Courtney fills out paperwork and has serious conversations with the doctor, Averie helps Annie.

7:50 a.m. – As Courtney pulls into the parking garage, Annie starts getting fussy and anxious. “Copy mama,” Courtney says. “I am brave. I am safe. I will be with my mama. I will be with Miss Averie. My doctor is my helper.” Annie repeats everything Courtney says, and it calms her down.

7:55 a.m. – Courtney, Averie and Annie walk into the doctor's office. Courtney brings a medical calming kit she created – a special bag filled with music, books, pictures and interactive educational toys. Annie is now able to participate in the appointment and feels empowered.  

8 a.m. – Annie’s name is called, and a tech walks them to a room to check her vitals. “With kids, it is important to gain trust and rapport with the tech, especially for Annie since she has a lot of medical anxiety, and we have worked hard to get through it,” Courtney says. Courtney asks Annie to say her name to the tech, then Courtney spells the tech’s name for Annie. They play a game with weight and height checks as Courtney asks, “How big and tall do you think mommy is?” Annie does great and they celebrate with her.

8:15 a.m. – Back in the room, Annie gets upset again, and Averie pulls out the calming kit so Courtney can go to the restroom. The nurse enters and introduces herself to Annie before prepping her for an EKG, which she had not had in a year. Knowing the number of leads and wires can be a problem, Courtney places a sticker on herself and says, “See? Easy peasy!” It is a struggle, but Annie gets through the procedure as she counts the stickers in French. They celebrate again after the EKG.

9 a.m. – Now it’s time for the echocardiogram – the hardest part because it is in another room. This is an important test to see Annie’s heart at baseline and to check for pulmonary hypertension. With an echocardiogram, the patient must remain still and calm so the technician can capture all the angles and ensure the heart rate and blood pressure don’t’ affect the results. 

Annie sees the table with paper on it and thinks it means she is getting a blood draw. “Up to this point, she hasn’t had any screen time,” Courtney says. “We save it for this moment – like the Hail Mary.” Courtney lies on her back next to Annie, and they snuggle. They sing songs from “Frozen” together, and the nurse laughs as Annie quotes the entire movie. “It’s so fun to watch Annie break people’s expectations of her,” Courtney says.

9:30 a.m. – Robert Loar, M.D., Annie’s cardiologist, enters the room. Annie was one of Dr. Loar’s first patients; Courtney began seeing him while she was pregnant. Dr. Loar is a TCU horned frog, too, and they discuss life before diving into medical updates. “He genuinely cares for Annie,” Courtney says.

Dr. Loar says Annie’s pacemaker has eight years of battery life left. He and Courtney then discuss heart pressures and anatomy; he says her repair is holding up beautifully and is exactly what he wants to see. 

“Annie’s story is so extreme and miraculous,” Courtney says. “Annie’s journey is still being used for good to help treat other children and give parents hope.”
Annie says, “Dr. Loar, I love you,” and he responds, “Annie, I love you too.”

Courtney packs the toys and celebrates with Annie again. Annie says, “We did it. I was brave. I was safe and we saw the doctor.” This is a big moment for Courtney, who has been helping Annie process emotions as a successful coping skill.

10 a.m. – Courtney takes Annie to KinderFrogs, a school program designed to prepare children with Down syndrome for kindergarten. Annie walks herself into the classroom, hangs up her backpack and sits in her chair. “Annie loves everything about school so much and has never missed a day – just leaves for doctor’s appointments here and there,” Courtney says.

2:45 p.m. – Courtney and Russ, Annie’s baby brother, pick up Annie from school.

3:15 p.m. – Courtney, Russ and Annie pick up Wells, Annie’s older brother, from school.

3:30 p.m. – Annie plays at home. Courtney is intentional with screen time, so they try to avoid TV and use it only as a last resort. They play outside, in the playroom or in their bedroom. Annie does a great job playing by herself or with her brothers as she becomes more independent.

6 p.m. – Dinnertime! Annie’s diet is clean and nutritious, which Courtney says provides tremendous health benefits.

7 p.m. – It’s Friday night, which means games with the family. They have found games Annie enjoys playing with them. “It is so fun to push her to do more, include her and see what she can do,” Courtney says.

7:45 p.m. – Annie chooses her pajamas. “No mommy I do it,” she says.

8 p.m. – Spencer lies with Annie until she falls asleep.