Amélie's Army

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 syn

drome 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)

Just a big brudder and his sister. She only wants him when he’s here. My heart is almost full - minus one.
05/03/2026

Just a big brudder and his sister. She only wants him when he’s here. My heart is almost full - minus one.

If you are not wearing your Olympic medal each day you are not winning.🏅
04/30/2026

If you are not wearing your Olympic medal each day you are not winning.🏅

Spring has sprung in Ohio. We have been taking long afternoon walks because the weather is such a joy.
04/30/2026

Spring has sprung in Ohio. We have been taking long afternoon walks because the weather is such a joy.

We had an amazing day at “clinic” with our people. I have lost touch to the cfc group but this meet up hit me harder tha...
04/18/2026

We had an amazing day at “clinic” with our people. I have lost touch to the cfc group but this meet up hit me harder than I thought. The families need our “seasoned” families, these families need immediate out reach when they sign up, these families need support. I spy one mom who had to walk out because she wasn’t prepared for the full spectrum of CFC and we have all been hit with that recking ball. I was able to notice and give her a genuine gentle hug with a hug of encouragement and a hug of two mom hearts beating together. She immediately cried hard and then the breath out was so freeing for her. Our kids are not black and white our kids are gray, our kids are all different and certainly comes from different upbringings. But the feeling of family is when guards are let down this is the most amazing feeling ever. I am so grateful for a “welcome” back and the high that is given when serving others.

Please watch and like Amelie’s brother college video. Enjoy!
04/09/2026

Please watch and like Amelie’s brother college video. Enjoy!

Take a journey with underdog Rocky Road as he looks to re-spark his boxing career with an unthinkable fight with the great Apollo Feed, the O.B.C.D champion....

04/06/2026

Home girl who now gets music therapy, has her own instruments at home.

My sweetest baby.
04/01/2026

My sweetest baby.

Bring your kid to work day and this is how she treats her boss. 😆
03/31/2026

Bring your kid to work day and this is how she treats her boss. 😆

It was wonderful to reconnect with familiar faces and make new connections. Indeed, Amelie accompanied Lacy on a wheelch...
03/20/2026

It was wonderful to reconnect with familiar faces and make new connections. Indeed, Amelie accompanied Lacy on a wheelchair ride, while Olivia enjoyed a ba****ck ride with me.

This girl keeps amazing Brent and I. 2 hours at a children’s museum, baffled us both.
03/17/2026

This girl keeps amazing Brent and I. 2 hours at a children’s museum, baffled us both.

Yall look this freaking girl!!!! I can’t in my emotions of it all. But look at this. Yes she was tired and yes we did ab...
03/06/2026

Yall look this freaking girl!!!! I can’t in my emotions of it all. But look at this. Yes she was tired and yes we did about 30 minutes of work, but Look at this scooter riding ho**er. She even did a bike with training wheels. She hasn’t been up to par fully lately but we are scheduled for a huge huge complex medical appointment on Monday. My fingers are crossed I as a mom have shaken enough trees to get us help with medical cost because we are drowning not having a secondary insurance. I do have an amazing community of mommas here in Ohio that have offered supplies for free, which is a blessing. But her medication costs are through the roof, with that being said there is always a victory in the path of crap. Fingers crossed, and FYI she loves her mail!

Rare Disease Day hits different when it’s your child.CFC Syndrome isn’t something we chose. It’s something we learned to...
02/28/2026

Rare Disease Day hits different when it’s your child.

CFC Syndrome isn’t something we chose. It’s something we learned to fight. It’s specialist appointments, insurance battles, therapies, exhaustion, and loving your child so fiercely it changes you as a person.

Amelie has taught me more about strength than anyone ever could. Some days are heavy. Some days are beautiful. Most days are both. But she is not her diagnosis. She is brave. She is funny. She is stubborn. She is ours. And she is worth every ounce of advocacy.

Rare doesn’t scare us. It makes us louder.

Address

Warren County, OH
45036

Website

Alerts

Be the first to know and let us send you an email when Amélie's Army posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Practice

Send a message to Amélie's Army:

Shortcuts

Share