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Amélie's Army Amélie's Army is dedicated to Amélie Airhart who was diagnosed with rare Cardio fascio cutaneous Syndrome. Hi! She also has a gene mutation of grin2a.

I am Amélie Tully Airhart I was born July 2013 at 33 weeks (2 months early ) and after a month in the NICU I was able to go home for a short time. In May of 2014 I was diagnosed with CFC (Cardio Facio Cutaneous Syndrome) after several months of hospital and ICU stays and numerous misdiagnosis by different doctors who were searching for answers for me. This is My Story

CFC is an extremely rare syndrome with just over 800 diagnosed cases WORLDWIDE (11 in Louisiana) . The syndrome affects the heart (cardio-), facial features (facio-), and skin (cutaneous-). CFC is caused by a mutation of a gene at the time of conception or hereditary. There is currently no known cure for CFC and is some cases deadly, but with proper management, intervention , and extensive therapies Amélie's health will hopefully improve. Common with CFC Children, Amélie has a relatively large head, curly hair, and areas of scaly skin along with a heart murmur and a small hole in her heart which is closely monitored. Amélie is being fed via a g-tube ( tube surgically placed in stomach and fed specialty formula by machine). She currently also has a surgically placed Mediport which is for iv therapy and an access point for blood to be drawn and monthly Immune replacement infusions. Because our visits were so frequent this was another necessary surgery after she was developing a fear of Nurses from being stuck a multitude of times for iv and blood during all of the hospital stays along with the constant "blowing" of the iv sites. She has a fatty acid oxidation defect in which her body doesn't absorb carbohydrates resulting in a low body weight and is a contributing factor to a "failure to thrive" diagnosis along with her other current diagnoses. She is fed a special formula with additives due to this condition which is very costly and as you would imagine she goes through a large amount as a growing child. She was diagnosed Heteroplasmy Mitochondrial disease. She was recently diagnosed with von willie brand syndrome and raynauds disease. Most Children diagnosed with CFC will have some degree of learning difficulty and developmental delay. Amélie at the age of 8 years old is able to walk only very short distances, uses sign language for communication and attends school 3 days a week. Amélie also was diagnosed with hyperopia, and astacia which are both eye conditions. Her eyes (one at a time) drift to the side but are eventually drawn back to the center. This is currently being monitored at Texas Childrens and may eventually result in another specialized surgery for her. Her mother was forced to leave her job in order to care for her at home and the hospital. Currently her mom serves as the program coordinator for CFC International. The wonderful doctors at Tulane in New Orleans and Children's hospital and pediatrician Adrienne Musumeche take the most wonderful care of her. Through all this Amélie has remained tough and is a very happy child, her constant smile will stick with you if her unique laughing chuckle does not. " I will praise thee; For I am fearfully and wonderfully made" (psalm 139.14)

Look at this tiny tyrant, she has life back. She loves going to her new school and of course is the boss there. Pool the...
30/01/2026

Look at this tiny tyrant, she has life back. She loves going to her new school and of course is the boss there. Pool therapy is her favorite secondary is music therapy, babbling has become a new past time hobby. She is enjoying her books again and getting around on her own.

She would have died if we had not made this decision to take a chance with only one option left at a chance for life. Everyday she does something new and it’s absolutely so rewarding. She continues to amaze us daily, what I love the most is when Brent gets home every 2 weeks, he gets so excited to see the changes in her. We have been so grateful and blessed.

22/01/2026

She has newly started kissing. Most
Importantly me! Her mom, hell we’ve moved across country and live poor, but I would never in a million years trade this for grief or sadness.

First day after school pictures.
22/01/2026

First day after school pictures.

First day of school pictures.
22/01/2026

First day of school pictures.

I also forgot to add that your favorite as***le laid directly on the floor while at our life savingDr Krueger’s office. ...
16/01/2026

I also forgot to add that your favorite as***le laid directly on the floor while at our life saving
Dr Krueger’s office. I also failed to take a photo but I also failed to say she may have licked the floor. Brent and I are not sure if we are super happy about it or if we go with the flow. But either way, whatever we have a child who is alive and enrolled in school after a 1 year (as a drop out, laugh that’s funny). She also did cut up in therapy by doing everything we didn’t ask her to do.

Omg we had 2 doctors appointments today and therapy. But we got to meet this absolute doll and her mom Morgan. Whom I ca...
15/01/2026

Omg we had 2 doctors appointments today and therapy. But we got to meet this absolute doll and her mom Morgan. Whom I can already tell will is going to be a dear friend. Her Annie girl is just the absolute cutest.

I question my decisions every single day, but one thing I never question is this: without my husband, Brent Long, Amelie...
10/01/2026

I question my decisions every single day, but one thing I never question is this: without my husband, Brent Long, Amelie would not be where she is today. He has carried this family—emotionally, physically, and financially—without hesitation. He shows up consistently, takes responsibility, and does what needs to be done without excuses, reminders, or delays. That level of commitment is not accidental; it’s character.
It truly takes an army. Aaron Lahasky, for selling our house with urgency and integrity. Darin Jacobson, for giving us his camper when we needed stability. Riverfront RV Park, for extending more grace than we ever expected. And to everyone who has sent cards, money, food, and support—you stepped in where others chose not to. I will never forget that.

I’ve learned the hard way that love isn’t words or promises—it’s action. It’s reliability. It’s providing support when your child needs it most, without being chased, reminded, or excused. Some people rise when responsibility is placed in front of them. Others disappear.

I still miss my Jackson Airhart every single day. He is my missing piece, and that absence is felt constantly.

Thank you all for the gifts, the generosity, and the unwavering kindness. I am forever grateful for the people who showed up, stayed accountable, and proved—through action—what family truly means.

09/01/2026

After therapy we went to play games and ride go karts. She loved it.

09/01/2026

First day of pool therapy. Turn up for the best sound.

My girl is making huge changes and progress. Look at this child, I am so beyond grateful and honored to continue this jo...
04/01/2026

My girl is making huge changes and progress. Look at this child, I am so beyond grateful and honored to continue this journey with her. She is now off 2 seizure medications with not a single breakthrough seizure. She is making tons of sounds and noises, she is walking all over the place and she has not stayed in bed longer than an hour at a time. She starts pool therapy Thursday and we are waiting to hear back from our local school to get her enrolled. My momma heart is so happy, I honestly never thought we would see this day again. Smiles and walking, even attempting to taste new things.

She had a great Christmas, she opened many cards which most were photo cards so I had to name each person and the. She w...
30/12/2025

She had a great Christmas, she opened many cards which most were photo cards so I had to name each person and the. She would hug the card. We will celebrate with a holiday dinner since Brent has been off shore for Christmas and new year. Ryker will be coming back to us and I couldn’t be more happy. We didn’t have much of a Christmas but we made the best of it and for that I am grateful. Amelie’s port is working and she has finally had her ivig, and on another positive note she starts pool therapy next week which I know she will enjoy!!!

This girl loved the Christmas cards yall have no idea. She opened everyone of them and hugged them and did her best Caju...
28/12/2025

This girl loved the Christmas cards yall have no idea. She opened everyone of them and hugged them and did her best Cajun awwwwww.

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