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.

Logan Magane entered the world as a bundle of joy in June 2023. While his parents were surprised by his Down syndrome diagnosis at birth, they quickly embraced the unique journey ahead.

“My labor had already been very different from what I had envisioned, as we both had complications,” Logan’s mother, Thais Magane said. “When the doctor told us they wanted to test him for Trisomy 21, my heart sank.”

According to the CDC, Down syndrome is the most common chromosomal condition diagnosed in the U.S. It’s also called Trisomy 21 because a baby with Down syndrome is born with an extra chromosome 21. Down syndrome affects how the brain and body develop, leading to varying levels of lifetime care needs.

Logan spent 14 days in the Cook Children’s Neonatal Intensive Care Unit (NICU). When he was discharged, he went home to meet his big brother.

When Logan was 2 and a half months old, he and his family met Cook Children’s Geneticist Alexandra Garza Flores, M.D.

“Logan has been a happy and charming little guy ever since I first met him,” Dr. Garza Flores said. “His diagnosis was not known prenatally, and so it was a surprise to his parents. However, they have been wonderful, proactive advocates for him from day one.”

Joining a Community of Supportive Families

Thais looked for local support and education and found the Down Syndrome Partnership of North Texas (DSPNT).

“DSPNT was very welcoming and absolutely incredible!” Thais shared. “Someone came to my house with a welcome basket and a ton of advice.”

Thais also turned to social media to communicate with others and share what she’s learned.

“They wasted no time in connecting with other families via social media and the local DSPNT, providing Logan with every resource available from the get go,” Dr. Garza Flores said.

Thais and her family have friends, family, church and work colleagues who’ve supported them. She joined the Abilities Team Member Resource Group at her work to support the Down syndrome community.

“Learning about the diagnosis can be overwhelming, but it’s opened us up to a wonderful world and community that we would have never known otherwise,” Thais said.

Caring for Logan and connecting with others has taught Thais a lot about what’s most important.

“My advice is that taking care of our mental health is just as important as taking care of our babies,” Thais advised. “Find your sweet spot in the community.”

Becoming Passionate Advocates

Logan is now 16 months old. His body naturally takes more time to develop motor skills and other growth milestones. Thais advises others to focus on every child’s unique timeline.

“The amazing thing about Logan is that he surprises my family every single day,” Thais said. “And I work hard not to compare. Logan will show us in his own time.”

Dr. Garza Flores also keeps an eye on Logan’s growth.

“Today, Logan is cruising, blowing kisses and finding his voice! He loves his big brother and can charm anyone he meets,” Dr. Garza Flores said. “It’s a privilege to be part of Logan’s health care team and watch him grow.”

Logan's care coordination is also done with Cook Children's Early Support and care Transition (NEST) Center for his growth and development. 

Thais and her husband also work with Early Childhood Intervention (ECI), a Texas state program that supports families with developmental delays, disabilities or certain medical diagnoses.

“I love ECI’s model of setting up 2-3 goals to work on instead of checking a long list of things we need to be able to do by a certain time,” Thais said.

Staying Excited About the Future While Managing Challenges

“Having Logan in my life is teaching me to slow down,” Thais said.

Thais and her family make accommodations, realizing they may have to for the rest of their lives. Even so, she’s excited to watch Logan’s personality form through his facial expressions, babbling sounds and interests.

“To me, the challenge remains with me,” Thais said. “I want to make sure I am the mama both my little boys need, and I take one day at a time. My baby is worth it. Logan is strong, handsome and has a beautiful smile that just makes you melt. Snuggling is the best!”

Thais and her husband’s unwavering love and dedication are a testament to the extraordinary potential that lies within every child.

National and Local DS Foundations

• Global Down Syndrome Foundation
• National Down Syndrome Society
• Down Syndrome Partnership of North Texas